So Long 2013

Ever since I began the blog in 2010, I've done a New Year's post saying good-bye to the outgoing year.  2010 was a good riddance message, 2011 was a thank you for a pretty good year, 2012 was a mixed bag; some good, some bad.  Had I known that less than two weeks later my world would be irrevocably changed, I might have had a different message.  But maybe I would have just lived the next 13 days better or have let events play out as they did.  I have no regrets about the time I spent with Joe. We were together every possible moment and I loved every second of the time we had.

Many things describe me at this point: older, thinner, wiser?, naive?, lonelier, skeptical, negative, positive, jaded, tired, hesitant, headstrong, opinionated, and on and on.  Full of contradictions.  I've learned a lot over the last 38 months.  A lot about my family, my friends, and myself.  A lot about pancreatic cancer, our healthcare system, and Duke University Hospital.  A lot about society, equal rights, and homophobia.  A lot about faith, generosity, and love.  The last 12 months I've learned a lot about loss, grief, and solitude.  The tears that I have shed since October 2010 could fill a large swimming pool.  However, most of those tears have been shed daily since January 13, 2013.  Although 2013 has been so far the worst year of my life, there have been people who have made a huge difference.  Were it not for them, I don't know if I would have been able to sit here today typing.  The days following Joe's death, my friends and family gathered around me.  My sister and niece stayed with me, Jill & Mark stayed with me, Lara stayed with me.  My PGUMC family circled around filling my home with sounds, food and loving friendship.  My Home Team family clung to me and gave me time to mourn.  Our caring professionals at the Duke Cancer Center and Duke Hospital reached out to me and helped hold me up.  The DCC gave me grief counseling.  I mean they literally gave it to me.   There was never a cost.  I was their patient as much as Joe had been.  When I visited the 9th floor at Duke Hospital the first time following Joe's death, I was greeted with smiles, tears, and words of condolence and care.  For the two+ years that Joe was hospitalized off and on, the nurses, doctors, and staff of the 9300 wing treated me with the utmost respect and warmth.  After his death, they continued to do so. 

During 2013, some people have gone above and beyond what I ever could have expected.  Friends have consistently welcomed me into their homes and treated me like family.  I've been able to spend mealtime and party time with some of the most wonderful children our Lord has ever seen fit to put on this earth.  Meals, along with giggles, smiles, kisses and sugar from Emmie, Asher, Cleona, Jake and Izzie have been wonderful. (A big thank you to the parents of those beautiful kids).  The Minnick family has included me in birthday dinners, family get-togethers and lots and lots of fun.  Jay, Allana, Jonathan, Micah, Harper and Molly are all so very, very special to me.  I've also learned that some people just have more patience and faith in me than I deserve.  Lucinda and Jay have both had to listen to me so many times this past year moan, complain, cry and well, cry some more.  Why either of you have put up with it is a testament to what good people you are.

Unfortunately, along with the support from so many, there have been disappointments from others.  But that is just a part of life.  Some people surprise you with how much they go above and beyond while others let you down.  Were the shoes on the other foot, I don't know which category I would fall into.  During 2013 while I learned about myself, I was pleasantly surprised at times and woefully disappointed at other times.  I started off with constantly second guessing each and every decision I needed to make with the question, "What would Joe want me to do?".  However, all that did was drive me crazy and keep me from making any decisions.  Finally by early summer I had to stop asking "What would Joe want?" and replace it with "What do I want or what do I need".  I still probably made all the wrong decisions, but at least I made them for the right reasons. 

There are still times, many times when I find myself almost coma like pondering how this all happened.  I know the why in my head, but I keep pausing, grasping for some way to make my heart and soul understand the how.  How can such an enormous personality, such a gentle giant, such a good man be here one minute and then not be here?  It's been almost a year and I haven't been able to get my mind around that.  Sometimes the thought just stops me cold.  I look at a photo and I remember the circumstances portrayed in it perfectly.  But how does that memory go from the happy moment captured on film (or digitally) to today's reality instantly?  The problem is that it doesn't.  It's in those moments of time that I can't entirely grasp the idea that Joe is actually gone.  This has been the longest year of my life but at the same time, it literally feels like it was just yesterday that he died and the day before that he was diagnosed.  If it were not for my short-acting anxiolytic benzodiazepine class of psychoactive drugs; my selective serotonin reuptake inhibitor; and my short-acting nonbenzodiazepine hypnotic of the imidazopyridine class that potentiates GABA by binding to GABAA receptors at the same location as benzodiazepines, I don't think I would be here today.  Basically, I'm a mess.

This Thanksgiving through Christmas I have been very sad but tried to put on a brave face when at all possible.  Everyone recognizes that this was my first Christmas without Joe and also know just how special Christmas was to him.  I've had family visits and Skype/FaceTime chats with friends far away.  Sadly, grieving this holiday is not unique to me.  Several close friends have experienced losses other than Joe this year.  Parents, children, relatives and close friends have left many people dear to me missing them.  I'm sure I'm not the only one who didn't quite feel the pull of the usual Christmas spirit.  I did decorate the house, but just a little.  It shouldn’t take me more than an hour to un-decorate it all.  I cried while putting it up and I’ll cry when I take it down.  This years trip to see my family on Christmas Eve didn't end the way I had hoped either.  Although I enjoyed talking and a few laughs, my smile was forced and on a couple of occasions, I could not hold back the tears.  Memories of how much fun Joe had at my family Christmas get-togethers, the silly jokes he tried to tell, and how easy it was for all of us to have such fun together proved a little too much for me and I had a bit of an emotional meltdown.  Sadly I put a damper on things by excusing myself and driving back to Durham at midnight.  The more I thought about Christmas Day, the more I realized I just didn't have the energy to pretend and plaster a fake smile on my face for hours on end.  I know I disappointed my family, but I also know they understand and forgive me.  My sister held me and cried with me.  I held onto Sara tightly and wept.  Aimee hugged me and spoke comforting words of love.  They all miss Joe and each in their own ways have found the holiday season lacking somewhat due to his absence.  On Thursday I traveled to Greenville to exchange gifts with Joe's family. Once again, the absence of Joe was a palatable feeling in the air. Hopefully next year will be just a little bit merrier and I will truthfully smile a bit more. 

2013 is on its way out.  For the first 13 days of this year I had my Joe with me.  He felt really bad each and every one of those 13 days.  It is extremely selfish of me but I would gladly relive each of those days over just to have him here to sit beside me, hold my hand, talk to me, and just tell me he loves me one more time.  I know that wouldn't really be enough for me, wouldn't really be right for me and would not be fair to him.  But rational thoughts and grief rarely go hand in hand.   For now, I'll just look at my assortment of YouTube videos that I loaded of Joe playing music, smiling that infectious smile he had and calling me "Jeffrey!" when I annoyed him.

What does 2014 hold in store for me?  Good question.  I wish I had the answer.  Actually I wish I had AN answer....any answer.  I know that on Fridays I will meet Mike and Jeff for lunch.  On Friday nights I will go to bed early and try to sleep past 7 a.m. on Saturday.  I will record Duke basketball games to avoid being a jinx and causing them to play poorly, only watching the recording if they win.  I will watch my favorite TV shows, talk to Joe during them like an insane person because I know that is one of the few drawbacks to Heaven: no Homeland, no The Good Wife, no Revenge, no Modern Family, and definitely no Teen Wolf, True Blood and Vampire Diaries!  Because of that, I know he is sneaking a peek at what I'm doing on certain TV nights.  I know that I will continue to eat well, continue to exercise (still looking for those elusive endorphins - hopefully I haven't done too much damage with weight gain during the holidays), and wake up tomorrow.  Beyond that, I don't have a real clue.  But I am open to suggestions. 

My New Year’s Wish:

May we break down boundaries, tear down walls, and build on the foundation of goodness inside each of us.  May we look past differences, gain understanding, and embrace acceptance.  May we reach out to each other rather than resist.  May we be better stewards of the earth, protecting, nurturing and replenishing the beauties of nature.  May we practice gratitude for all we have, rather than complain about our needs.  May we seek cures for the sick, help for the hungry, and love for the lonely.  May we share our talents, give our time, and teach our children.  May we hold hope for the future very tenderly in our hearts and do all we can to build for bright tomorrows.  And may we love with our whole hearts, for that’s the only way to love.

Goodbye 2013!  Hello 2014!  

Joe Has Been Discharged from Duke Hospital

Joe has been discharged from Duke Hospital tonight and we are home. Tomorrow Duke Home Hospice comes to admit him to their program. Details will follow after I recover from my nervous breakdown.

Things That Go Bump In the Night

At a little before 5:00 am this morning, here in Duke Hospital, Joe woke up and had to go to the bathroom. Unfortunately, I was asleep and did not realize he had gotten up, until I heard the loud bang. Joe had gotten dizzy and fell in the bathroom. He hit his head in three places and they have now taken him to get a head CT scan just to rule out any damage. No one is to blame but he is now under no circumstances to get out of bed without assistance. Needless to say it was a rude awakening for me and I'm a bit rattled by it. Amazing how many nurses can appear so quickly. Within 20 seconds of me hitting the call button there were 7 nurses in here. No long after that, the doctor appeared and ordered the scan upon examination of his head. Things that go bump in the night are real!.....and scary! Anyone have a spare tranquilizer??? Sigh........

A Sick Puppy at Duke

Joe is one little sick puppy tonight at Duke. No appetite, so only a couple of spoonfuls of food. That leads to no energy and that leads to feeling even worse. As of a few minutes ago, he can't stand without feeling dizzy. The fluids given this afternoon haven't made any difference with that thus far. I did manage to get a smile out of him this afternoon but tonight he's all serious...and quiet. The quiet is necessary however. When he talks he starts coughing which just tires him even more. We won't have the results of the labs from this morning until Wednesday at the earliest. If they can just get the dizziness under control, we will be ahead of the game.

It's going on 10pm now and he has rolled over to go to sleep (although vitals are to be taken at 10, so he'll have to wake up).  Thank you for all the calls, messages and prayers today.  I'm praying tomorrow is a better day with Joe showing signs of improvement.

Goodbye 2012

I thought I might try something a little different for my end of the year post.

2nd Day of Christmas Brings Discharge from Duke Hospital

Joe was released from Duke today around lunch time. Once we got home we made our Christmas lunch and relaxed for a while. A discussion of our upcoming train trip to Alexandria, VA did not go well since Joe and I were of different opinions as to whether or not to proceed with the plans. After much....errrr...discussion, Joe cancelled the train reservations. At least we got a full refund.

The CT scan results from yesterday showed growth in the lesions on Joe's liver. Not sure where we will go from here with regard to chemo choices. That discussion will be held with Dr. Zafar next week. Of course Joe is upset about it but he appears to be doing better than me. Maybe I've reached my breaking point. I don't know but all I've done since late yesterday is break out into sobs. Also I think I've gone past the limit of exhaustion. I wish I could sleep for the next week or longer.

No witty banter on this post I'm afraid. Just not in me.

Thanks for all the prayers, messages and get well notes. We appreciate each and every one of them.

Christmas at Duke

We've already spent Halloween at Duke this year. We came really close to spending Thanksgiving at Duke. Now we are managing to get the Duke Hospital experience for Christmas. Not exactly what we had planned, but we are together and that's all that is truly important to me.

Joe had been having severe back pain over the last few days and it had become obvious that the fluid was once again building up in his abdomen.  So I called the oncologist covering for Dr. Zafar today and he urged us to come on to the emergency department.  He called ahead so they were already expecting us.  We were checked in quickly, an ultrasound was done, fluid was drawn and he was admitted to the 9th floor all within 4 hours.  That's good service!  When we got up to the room, not only do we have one of our favorite nurses (Brittany), but our absolute favorite 9th floor doctor is here, Dr. Yvonne Mowry.....YAY!!

Thank you to the near capacity crowd that attended Joe's piano concert last night at PGUMC.  With it so close to Christmas, we were pleasantly surprised with the turnout.  I hope it helped get everyone in the Christmas spirit.

Hopefully this will be a short stay but neither of us will let it dampen our Christmas.  It's just a delay in getting to the presents and food.

Worship fully, Spend less, Give more, Love all

Quick Addendum to Yesterday's Post - UPDATE

Joe had his ultrasound on his belly at 8am this morning at Duke Hospital.  Results, sure enough, fluid build  up in his belly.  They withdrew 10 pounds, yep, 10 POUNDS of fluid from his belly. Actually 4 liters of fluid!  That should hopefully make him feel much, much better and help to make his pants fit again!  I am so relieved.  They said this is common and could happen again.  Just keep a watch and if we notice a change (which I noticed 2 months ago yet no one would believe me) to go back and they can do it again.  Joe said it didn't really hurt so I am grateful for that.

This makes me feel a little better today.

A Quick Trip to the Duke Cancer Center Today

The last few days have been miserable ones for Joe. His back pain has increased in intensity each day. The pain has caused constant nausea and bouts of vomiting. He finished the infused antibiotic on Tuesday and had the picc line removed the same day. He spent much, and by much I mean all except for maybe 2 hours, in bed Tuesday with a heating pad on his back and taking his pain meds. He hardly ate anything and what he did eat did not stay with him very long. In the wee hours of this morning he got up and took 2 more pain meds without eating and of course within an hour or so, he was throwing up again. (See post earlier this year about eating when he takes his pain meds....a must do!). Joe had called the oncology triage number on Tuesday and spoken to our oncology nurse. She told him which of his pain meds should be most effective and to call again today if he wasn't any better. Well obviously this morning he wasn't so he called back. At first they thought he should go see his primary physician but an appointment there would not be possible until Thursday. Daryl, our nurse, called back a little later and said that Dr. Zafar wanted him to come in for a CT scan and had scheduled an appointment for 1pm today. So I left work at noon, picked Joe up and off to the Duke Cancer Center we went. We won't have the results for days but Dr. Zafar should have seen the results by days end and should at least know if the pain is coming from something cancer related. That is the biggest fear. We already know that one of the common symptoms of pancreatic cancer is a specific type of back pain but thus far, the area where Joe's pain has been is not typical. But time will tell.

One positive is that this afternoon the pain has eased off some. He was even willing to walk back to the parking deck after we left the DCC instead of waiting for me to drive around and pick him up. After stopping to get him some lunch, I dropped him off at home and went back to the office. Apparently he felt well enough after he had his lunch to make a quick trip to the grocery store for a few items. He even had dinner ready when I got home. Although his back is still bothering him, it is obvious that he is better. Hopefully this isn't temporary and he will continue to improve. The last time his back was hurting really bad it only lasted a couple of days. We are now on day 4 so I am very hopeful it has run it's course.

While I have your attention I have one pet peeve I have to get off my chest. Parking decks and the way people drive in them. I spend a lot of time in parking decks. Weekly at the one at the cancer center and then in the last few months, the visitor deck at Duke Hospital. What is it about a parking deck that frightens people so? I'm assuming it is fright that causes them to drive at a maximum speed of 2 mph while in the deck. And what is worse, why am I always behind them? Do they see me coming? For goodness sake people, the empty spaces are easy to see without crawling along. Some of us would like to just park and go inside. There are only a limited supply of spaces right by the elevator. I know we all want one, but you can see from 50 feet away if there is one. You don't have to approach them so slow. I am not saying that I think you should speed through the deck, but a solid 15 mph, still slow, but moving would help out those of us with someone sick or who have somewhere to be because, yes, even when leaving, I still get behind the car that is deathly afraid someone will back out and they won't see them in time to stop. Believe me however, at 2 mph, you will have plenty of time to stop. So if your reflexes are so slow as to make you afraid to drive in the deck any faster than a snail, consider calling a taxi. For the love of all that is gracious and holy, if you don't, you will be the reason that I end up in hell.
There, I feel better.

Radiology waiting room (actually just a small part of it) at the Duke Cancer Center

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

Day 3 After Release from Duke

Not much to really report since Joe got out of Duke. Sunday Joe played for both the 8:30 & 11:00 a.m. services at PGUMC and then we had lunch with a childhood friend of Joe's, Sarah Shutt. We get to see Sarah every 6 months or so but this was the first time she was able to be here on Sunday and join us at Pleasant Grove for church. We had a nice visit for lunch and then headed home. My family surprised us with a Sunday afternoon visit and then Sunday night, we made an early evening of it and turned in before our usual time. The time change definitely makes a difference on our internal time clocks.

Today Joe had an oncology appointment at 8:00 a.m. this morning after his 7:00 a.m. labs. Leigh was pleased with his lab work and his overall health. His counts were good so she was pleased. Joe continues on his two antibiotics - 1 oral and 1 IV through his picc line. He is tolerating it pretty well. A little nausea here and there but that is one of the noted side effects of both antibiotics. He manages it with this odansetron and compazine (or as stated in blog entries from 2010 & 2011 - the cadillac and ford of anti-nausea drugs).

Joe has felt well since his release. There have been no fevers thus far and he is resting as much as possible but admittedly is getting a little stir crazy. Tomorrow maybe he will get out a little more, but not overdo it. At least I hope not.

A big thank you to everyone for all the support last week, and the weeks & months before. It was tough but because of the prayers and support, we got through it.

He's Home!!...Again

Joe is home from Duke Hospital....again! This time he has his picc line and a whole box full of antibiotics to infuse over the next 13 days. A refrigerator full of little bitty baby like infusion bottles. Those along with pills will be a mainstay for the next couple of weeks. But he is home. I am physically and mentally exhausted. But he is home so I will sleep. He is home and he will sleep, hopefully.

Thank you.

Day 3 at Duke: Halloween 2012 Version

Joe started off the day with a low grade fever but was quickly given Tylenol and the fever subsided. Lab results from this morning showed his bilirubin down from the 3.5 of Monday to 1.3 this morning. Hopefully that number will continue to decrease to the .5 to .8 norm for him. Should have that answer after tomorrow's labs. Otherwise Joe has had a good day although a little tiring. Visitors most of the day and evening. Our nieces, Aimee and Sara came up from Hope Mills and spent the morning and early afternoon with him (Joe had a huge grin from getting to spend the day with Sara) and then this evening Mark and Jill came up and we all 4 had dinner together followed by Halloween candy and lots and lots of laughs. We always get together on Halloween so we saw no reason why a pesky hospital stay should interrupt the tradition. It made for a great evening.

Joe continues to be on two IV antibiotics: one every 8 hours for 30 minutes and one every 24 hours for 15 minutes. We haven't heard back from last nights cultures yet but it has only been 24 hours. We had been told he would have blood drawn for cultures daily, but thus far today, no blood letting. But since it happened twice yesterday maybe they have cut him some slack for today. His spirits are good as well as his appetite and general feeling of health. The jaundice has abated some so no pumpkin look today.

I went back to work today. Although I was worrying about him all day, even with the 9 or 10 phone calls and one FaceTime session, it was nice to be out of the hospital and back to doing normal, productive things. Mind you, I am not complaining. I am reminded of our first oncology appointment with Dr. Zafar almost two years ago when he said we would both adapt to a new normal. Our normal has changed repeatedly over the last two years, but even with the pain and anxiety, these two years have brought me and Joe even closer than we were before and have been filled with some incredibly wonderful and joyous moments. Those times are what makes these times easier. Those times and these remind me of just how much I love Joseph Lupton and what a gift and joy he is to me. Granted, I still am not amused by his sense of humor, once a nerd, always a nerd. But nerds are quite lovable. At least mine is.

He is sleeping soundly. I am wrapped in my cocoon in the chair. It may seem odd to some, but I think i could sit here watching and listening to him sleep forever. But of course the serenity will be shattered by a nurse any moment now with antibiotics. Oh well. That's what dreams are for.

Thank you to everyone. Our friends, our family: Bill, Phyllis, Sandy, Aimee, and Sara; all of PGUMC - Jay, Allana, Lucinda, Cleta, Fredda, Cindy H.,Chelsea, Challie, Donna, Julie, Ivy, Deborah - basically all of the choir; the nurses and staff of 93 at Duke Hospital (simply the most caring, sympathetic, compassionate people I've ever met - Lucie, Brittany, Jacquelyn, Heather, Britany, Lila, Jon, Sam, Joann, Stephanie, Katherine, Donna, Kim, and the list could go on and on); and my office for being so understanding about my absences (Kim, Dianne, Susan, Barbara P., Sandra and MA)....especially MA who was about ready to just leave the office to come be with me during Joe's surgery yesterday when he was not doing so well in recovery and I was quickly becoming a basket case. So many people that care. I hope all of you know how special you are. If I ever seem to take you for granted, call me out on it because I don't mean too. You have been my salvation. Thank you.

Surgery complete

Joe is out of surgery. There were some low blood pressure and low oxygen level issues in recovery so he had to stay a in recovery a little longer. They removed the stint completely. The surgeon said the bile duct was open and felt the stint was not doing anything. There was "sludge" in the pancreas and they cleaned that out. Surgeon felt having the foreign object, i.e. stint, was counterproductive and maybe the cause of bacteria. Back in room now. Oxygen levels are more normal and although BP is low, it is moving upwards towards normal.

This is what insanity looks like

This is what insanity looks like!

Joe had his scheduled oncology appointment this morning at 8am and it was there that he got the unfortunate news: the last blood drawn for cultures last week had bacterial growth....on Sunday night. That might explain his 2 fevers yesterday, especially the 102.8 last night. The infection this time however is E. coli. So he is back in the hospital looking at at least a stay until Friday. Also, with this mornings labs, his bilirubin count was at 3.5 instead of the normal .5 that he has hovered around since his last stint placement in January 2011. So the GI folks will be in to talk about doing another ERCP (down his throat to the pancreas) to see if the stint is clogged, moved or whatever might be causing the increased count. We won't know until later when that surgery will be but it will be very soon.

Meanwhile they will start him on new antibiotics to take care of the E. coli and the gram negative rods from last week. We are in a "steel room" again. Just like the one when Joe was in the hospital in December 2010. They are a real pain since you have to push the auto door opener on the wall to open or close. That means lots of light at night when the nurses come in. Arrrggghhhhh!!

My bad mood from yesterday just got worse. To make matters worse, Joe is eating my lunch. Is nothing sacred?

Stay tuned. I'm sure there will be more as more doctors check in.

2:45pm: Joe was taken for an ultrasound.  Got to see what that stint is or isn't doing.  I'm just sitting here watching news on Sandy.

7:00pm:  Joe just left to have a CT scan.  He should be back within the hour.  It's not that far once you take the elevator to the 1st floor.   I'm still watching news on Sandy (there is nothing else on! Arrrrrgggghhhhhh)

Okay, Joe is insisting that I tell this story.  While Joe was gone to get the ultrasound, the doctor came in (same one as last week - Dr. Lee) and thought I was Joe. She started describing what they were planning to do even telling me they would be doing an ultrasound. I said that "he is down getting the ultrasound now. They took him about 30 minutes ago" but that didn't seem to register. It wasn't until I said " I'm not the patient" that it finally dawned on her that I was not Joe. She says, "I'm sorry but you two look so much alike".... I know people start to look like their pets, but I truly do not see any 
resemblance between me and Joe. Oh well.

Hopefully the last night at the Club Duke Spa (hospital)

Joe is now on oral antibiotics so hopefully when the 48 hours are up from when the last lab cultures were taken there will be no growth of bacteria and he can go home. That blood was taken around 3:30pm Wednesday. So cross your fingers that we get good news tomorrow.

Joe had a good day. It was quiet, he watched some tv shows and walked 18 laps around the the 9300 floor. That's approximately a mile so at least he got some exercise. Tonight we were visited by Lucinda and Harrison Sullivan, which was great!

Joe has already turned in. The sound machine is going, tv is turned off and it's just me in the light of my iPad. I've taken my meds so hopefully soon sleep will come for me. Continued gratitude for all the prayers and good wishes. I am so looking forward to Joe coming home. As I've said before, hospitals make my head numb.

Thanks to Lucie, Ginger, Sarah, Chastity and all the staff on 93. As always, you do a wonderful job looking after Joe.

Joe is all nestled, snug in his bed!

And thus came the end of the first full day of this trip to Duke. It was an excitement filled day at the Club Duke Spa. Port removal, several visitors, antibiotics flowing, blood drawing, meals eaten, long phone conversations, FaceTime with me during lunch, and of course iPad usage. All in all not a bad day....considering he's in the hospital.

Joe also found the time to volunteer for another research study. This one on Bloodstream Infections Database/Repository. Once a teacher, always a teacher even if his blood is what will help with research. This must be at least the 5th study he has been a part of. Oh well, that's my Joe, always giving.

Anyway, since he did not sleep well last night, he is already sound asleep with little snores here and there.   Next interruption should be around 11 pm when he gets his next antibiotic (Zosyn).  Until then, I'll just watch a movie on Netflix.

Thank you to everyone.  This is easier because we know we have so many people praying and sending positive, healing energy our way.

Port Removal in Progress

They (the powers that be at Duke) have decided to remove the port that Joe had put in back in August.  This removal however is just a precaution since no bacteria or infection has yet to be traced to the port.  Whether he will have another port put in on the other side of his chest has yet to be determined.  The chemotherapy that he is on can be done via IV.  That isn't optimal, but it can be done.  They came for him for the surgery around 8:00am.  It is supposed to take around 1 1/2 hours but he will be quite sleepy and loopy afterwards (just like when they put it in).

He didn't have any fevers last night.  They started him on fluids around 6:30pm and then antibiotics around 8pm.  The antibiotics run for 30 minutes every 6 hours.  He ate well for dinner last night but was restricted to no food or drink after midnight for this morning's surgery.  They drew blood for cultures around 8:30pm and also needed a urine sample for culturing.  He slept well except for the usual interruptions.  More antibiotics around 1:30am, vitals around 3am, more blood drawn at 5am and then the final wake up at 6:15am when his nurse (Sarah) was in for her last check-up before the shift change at 7am.

They have identified the type of bacteria, but thus far I have not encountered a native English speaking doctor to tell me the name so I could look it up.  The doctor on the floor that was in for about 30 minutes last night was of Asian origin and although she said the name several times, I couldn't quite understand.  I didn't want to ask her to spell it for me, although I should.  I'm sure I can get the name from either Leigh, Dr. Zafar or Jason at some point today.   Speaking of Jason (Joe's former middle school student who is now a nurse in the Duke Cancer Center), he surprised Joe with a visit yesterday evening.  He had found out from another patient of his that reads our blog that Joe was in the hospital.  So he looked up the room (on the blog) and walked over to visit.  Just goes to show that once Joe has taught you, he has made an impact on you.  It also goes to the character of Jason.  He's very caring and dedicated to his profession and goes above and beyond the call of duty.  Thank you very much Jason.  It really lifted Joe's spirits to have you come by, as well as mine.

So today, I'm at work awaiting word once the surgery is done.  I'll keep pestering Joe on his cell phone, room phone and iPad until I get a response.  Or I can break down and call Duke for information.  I know this is not a major procedure but I still worry and won't take a deep breath or sigh of relief until I know he is out, conscious and talking to me.

Thank you for the prayers and words of support and concern.  We need a little extra right now and everyone is coming through.

9:31a.m. Update:  Joe is out of the surgery and eagerly awaiting his breakfast in his room.  It was painless and he is doing fine.

9:57a.m. Update:  Joe called again after his breakfast.  The oncologist on the floor came in (Dr. Riedel) and told Joe that the plan as it stands right now is to keep him on the antibiotics.  Apparently, the bacteria that has been identified has only been indentified by the family of bacteria, not the specific bacteria.  Until that is done, the general antibiotics will continue.  Once they zoom in more specifically, he will change antibiotics.  When released (earliest would be Friday), he will be on antibiotics at home for 2 weeks (no chemo).  They are doing another round of blood cultures this morning.  When they removed the port there was no sign of infection in the port site but they did flush it really well as a precaution. 

Bacteria, Bacteria Please Go Away

Joe got a call from Leigh Howard, our NP at Duke before 8am this morning that one of the blood cultures that were drawn yesterday has already (in less than 24 hours...which is really quick) started bacteria growth.  This means that once again there is bacteria in his bloodstream.  What this means is a trip to the "Duke Spa" i.e. hospital once again.  Most likely during this stay they will remove his port.  Although, the growth came from the sample that was drawn from his arm, not the port.  Time will tell as to exactly what they will do.  I am at work, early I might add and have already entered a listing.  Joe is busy getting his hospital bag together, calling the vet to get more drugs for Dolly and ultimately waiting for the hospital to call and tell him to come to Admitting when they have a room for him.  Looks like we will be seeing our friends on 93 again really soon.  As much as I hate that he is going back in, I am so very hopeful that they can pin-point the problem and get these fevers under control once and for all.  My nerves & emotions have been all over the place the last couple of weeks.  Until the call comes, I will wait at work and Joe will clean himself up and wait at home.

Cancer is a huge pain in the a**!

At Duke now waiting in admitting for someone to come get him to take him up to the room (3:30pm).

Wow! The fastest time in admitting ever. It's 3:40 and we are already up in the room (9307)

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!