I've been remiss

I've been quite remiss at posting.  At guess that is what happens when you are newly married, take a nice long honeymoon, the spring real estate season is in fully swing and you have to make a serious decision on what to do with the cancer growing inside you.

On June 15th I had my yearly biopsy, a little early because my PSA results had come back extremely high, indicating a possible increase in growth of the tumor.  On July 10, I had my consultation of the results and there had indeed been growth and the discussion of what type of treatment or surgery needed to take place.  After Steve & I spoke with my urologist (surgeon) and with my 2 radiation oncologists, it was decided that I was not a good candidate for radiation and that the best option for me was to go ahead and have the surgery.  So, on August 16th, I had a radical prostatectomy at Duke.  According to my surgeon, Dr. Judd Moul, my surgery went extremely well and was practically a textbook example of how it was done.  While I was told what to expect, I have since realized that surgeons while telling you the truth, don't tell you everything (and probably for good reason as no one would probably have surgery ever again).  Recovery has been slow and painful.  I was in the hospital for 2 days coming home on the 18th.  After 25 days at home, I went back to work a few hours a day on September 11th.  That itself has proven to be a challenge.  First was the blurry vision caused by one of the myriad of meds that I was on for the first 2 weeks after the surgery and then there is the inability to sit for more than a couple of hours at a time.  I'm still searching for that perfect cushion that helps.

So here I sit (actually propped up on my hip).  The good part: the pathology report from the removed prostate was good.  There actually were 2 tumors as it turns out, not just one.  The margins from the removed prostrate were very good with no evidence of any spread.  The not so great part: the emotional toll, the psychological toll that this whole thing has taken on me and on Steve.  Also, the physical repercussion from the actual surgery itself and permanent change in my anatomy.  It is trying to say the least.

So those are the highlights of the last couple of months.  But hey, I'm alive :)

Prostatic Adenocarcinoma

And the beat goes on.  I was up until 2am researching…well sort of.  Basically I was reading and getting more and more anxious about the decisions I need to make.  However, I did finally make a request of my urologist to refer me to an oncologist at the Duke Cancer Center to at least get more information on alternatives other than surgery (that was at 1:30am).   Not that I’ve made a decision to pursue another option, but I do want to make sure I have explored all information I can get before the decision is made.  Of course, I’m sure I won’t hear anything from my urologist until the first of the week with regard to this, and even then it will probably be days, if not a couple of weeks before I could get in to see the oncologist.  Even so, it’s forward progress, at least in my mind.

At my appointment last Thursday, we went ahead and made a 3 month appointment for another PSA, DRE and possible ultrasound (automatically in the “active surveillance” mode), so any information I can ascertain prior to that would be a plus.  That isn’t to say that between now and then I won’t make the decision to go ahead and have the surgery, which is a real possibility.  I’ve talked to family and friends about the information I got from my urologist and the prevailing opinion is that I go ahead and have the surgery.  The thought of the surgery isn’t pleasant, however it’s not the actual surgery that has me hesitating, it’s the after effects of the surgery that give me pause.  Am I rambling?  I think I am.

Anywho, I am going to be in a holding pattern until I hear back from my urologist or Duke.  Maybe I’ll get lucky and this will be done quickly (because we all know I am a really lucky person….please note the tone of extreme sarcasm in that).  I’m scared, I’m anxious, I’m nervous, I’m spending way too much time in my own head!

Thank you for the outpouring of notes of concern, optimism, prayers and support.  It means so much and is very helpful knowing so many people are “in my corner”.

Peace-

Jeff

10:37am P.S. - and just like that, after maybe "overstepping" what is proper protocol, I will be hearing from a patient coordinator at Duke the first of the week.  Sometimes it pays to know someone there who is an awesome, awesome doctor and person!  Thank you Yousuf.

... and the answer is....

Yeppers.....it's positive, prostate cancer, Prostatic adenocarcinoma.  However, it appears to be early.  There are several "ratings" of the veracity of my cancer and so here they are:

Gleason grade: 6 (3+3)  That puts me at the "low risk" side of the scale.
TNM staging system: B1
Prostate Cancer Stage Groupings: T2, N0 M0, G2
Stage: II

Options:
Watchful Waiting- Monitored with periodic (3 mos) PSA & DRE, X-rays
Active Surveillance-Periodic PSA, DRE's but definitive therapy is instituted when pre-defined changes occur.
Surgery- Radical Prostatectomy (3 methods of same surgery: Retropubic, perineal or laparoscopic)
Brachytherapy (Interstitial seed placement) - percutaneous placement of radioactive seeds in the prostate
Cryotherapy- Liquid nitrogen or argon gas administered through probes in prostate
HIFU- High intensity focused ultrasound
Radiation therapy - usually used as a palliative treatment for pain caused by bone metastases.

The only "real" options to consider right now however are watchful waiting, active surveillance, surgery, or radiation.

And I have to make this decision.  We all know how good I am at making bad decisions!!!!
So those are the facts folks.

Prostate Biopsy (ies)

Ok.  It's been a few days since I had the biopsy.  First off, let me stop referring to it in the singular.  There were actually 12 biopsies taken.  Yep, 12.  Now, I didn't go into it with the thought that there would be ONE sample taken, however I didn't really think about that there would be separate samples taken.  I of course had Googled prostate biopsy and read about it and the whole experience was pretty much what I had read online.  However, reality is not the same as reading.  Without going into too many details, lets just say that between the 6 shots that preceded the biopsies and then the 12 samples that were taken, the whole experience was not pleasant.

However, I do have to say that Dr. Huang was very considerate and wonderful during the whole procedure.  He talked to me, constantly inquired about how I was doing and did everything he could to minimize the pain and trauma of the whole thing.   Thursday night was though one of the most painful nights I have ever spent. ....and Friday was not picnic either!  I even took a pillow with me to work...not that it helped much.  More psychological assistance than anything else.

Results will not be in until sometime this week.  What the steps are once we get the pathology results,  that remains to be seen.  Positive: surgery and/or oncology.  Negative: We didn't even discuss that.

Waiting...waiting...waiting...and we all know I am not a patient person!

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.

Should Old Acquaintance Be Forgot.......

As 2011 draws to a close, please indulge me while I reminisce about the good and the bad parts of the year. I think I'll start with the bad, or at least not so good parts. Of course, Joe's pancreatic cancer took "center stage" much of the time. Early in the year he finished his radiation and first round of chemotherapy. He had gotten through this with very little side effects. We then had a 6 week waiting period before he was to have his surgery. Just 6 days before his scheduled operation he developed an infection and was hospitalized after more than 24 hours in the emergency department at Duke. We played a game of switching rooms before we took up permanent residence on the surgical floor. Joe had the surgery on schedule on that Tuesday but the surgeon could not remove the tumor due to it's attachment to an artery. He did however remove his gall bladder and "re-design his stomach" in case the tumor should start to grow and block the colon. Joe remained in the hospital for 8 more days before coming home. Unfortunately, he was only home for 2 weeks before he was back at the emergency department (only 8 hours this time) and subsequently admitted for a post op infection. This stay was just 6 days but ended up with him coming home with a wound vac. The trauma that caused when it malfunctioned is not something I'll ever forget. (imagine me having to remove the vac from his open incision and then stick my hand back inside him to pack the opening with gauze......I still have nightmares). And of course we can't forget that during this time I was hobbling around with 2 fractures & a torn ligament in my left foot from a fall the day after he came home from the hospital. But after that, it was smooth sailing for a few months.

Once Joe was fully recovered from the surgery, he started back on chemo. He has 1 treatment per week for three weeks, then one week off. After that, it starts over again. He has done well, even gaining a little weight in the process. Weight however isn't the only thing he gained. He also acquired a hernia, a big hernia. We saw two surgeons (I did NOT like the first one) and unless Joe develops any problems we will just let it go for now. He did get a binder to wear around his waist to help hold the hernia in somewhat. He continues to do well with the chemo and his two most recent CT Scans have shown no growth of the tumor.

We managed to get a real week of vacation at the beach this summer and as the warm weather was drawing to a close, we made a trip to Connecticut (thanks Bill & Sandy for getting us there and back) where one of Joe's college roommates and his wife, Rob and Lola Hugh live. There we also did something we have talked about for years...we got married. It was the most wonderful day of both our lives and not a day has gone by since then that I haven't thought about that day and what it has meant to us. We will never be able to thank Lola and Rob enough for making all the arrangements and putting it all together so perfectly for us. We have so many photos from that whirlwind trip and will have a video to go along with them soon. Labor day brought a quick trip to Surf City to visit friends, Thanksgiving was a trip to Myrtle Beach to relax and Christmas was a trip to both Greenville to see Joe's family and a trip to Hope Mills to see mine. Our traditional holiday trips the year before had all been canceled due to Joe's diagnosis so this year we were determined to do what we have traditionally done. Cancer be damned!!

There have been many highs and many lows this year but one thing has remained constant, the love that Joe and I have for one another. Actually one other thing has remained constant, the love, caring and prayers from our friends and from Pleasant Grove United Methodist Church. PGUMC has been so supportive and loving. Regardless of what the future brings, Pleasant Grove has made an indelible mark on both our lives.

Last year in the final post, I said good riddance to 2010. Although 2011 has been a rough year and there are certain things I wish hadn't happened or had turned out differently, there were so many wonderful and loving times that I am sorry to see it end. I'll just say good-bye to 2011 and hope that 2012 brings as many happy memorable moments. If we get that, it will be a great year.

Duke Clinics Make My Head Hurt

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

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

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

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

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

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

Trip to Duke to See the New Surgeon

We made it to Duke with a couple of minutes to spare thanks to my excellent driving skills and ability to find parking spaces in the parking deck. We were not in the waiting room but 5 minutes before Joe was called back for vitals and then just a few more minutes before his name was called again to go back to an exam room. Sitting in here at 2:15pm. Care to wager how long before Dr. Perez arrives?  The answer was: 15 minutes.  Although he might as well not have ever come in as far as I am concerned.  (This is where my opinion and Joe's opinion differ widely).  The summary of what this doctor had to say was: since you are not doubling over in pain or are not continuously vomiting he would prefer to wait.  That message seems to me to be in direct opposition to what Dr. Tyler said last week.  We basically spent a lot of money to have the doctor examine him for 7 minutes and give him his business card and say, "call me" when your symptoms get severe.

Joe is taking it lying down (literally - he is laying on the sofa), I on the other hand have already sent a message to Dr. Tyler expressing my displeasure and asking for some explanation or clarification.  I'm extremely unhappy with today and so it is very quiet in the Lupton Holland household right now.

11:30 am is the New 9:30 am

Apparently they were having a "buy one get one free" day at Duke's Morris Cancer clinic 1A.  At least that is what it looked like by the mass of bodies crammed into every nook & cranny.  I haven't seen so many people in one room since the opening day at Nordstrom Rack.

The appointment today was a follow up with the surgeon, Dr. Tyler, that did Joe's surgery back in February and the appointment wasn't until 9:30am.  When we arrived and checked in, Joe got a seat inside but I had to go sit in the hall.  After about 5 minutes, Joe texted me that the seat next to him was now empty and to run in ASAP, so I did.  And there we sat, until 10:30am when they called him back for vitals.  However, we were foolish enough to think that surely we would not be sent back to the lobby and would go from vitals to an exam room.  Oh how wrong can 2 people be!  So back to the lobby we went, however, now our old seats were gone, the seats in the hall were filled so we had to go all the way down past the elevators before finding two to sit in.  But someone must have been looking after us because within 5 minutes, Joe's buzzer went off and we made the trek down the hall, around the corner, past the elevator, back to clinic 1A and carefully criss-crossed through the maze of humans to the waiting nurse.  So at approximately 10:45am, we were in an exam room.  Now we are on a roll, right????.....wrong.....the 3rd year medical student came in at 11:25am....yep, 1 hr 55 mins since our scheduled appointment time and the first person to come in for an examination is a 3rd year med student...not even a resident.  However, he didn't stay very long and left the room to go get Dr. Tyler.  That took until 12:05pm....that's 2 hrs 35 mins from the appointment time before seeing the doctor.  But enough complaining.

We had informed the med student of Joe's hernia and when Dr. Tyler came in that was his first inquiry. Joe was then on the table making the hernia pop out (it does it really obviously when he is laying down and lifts his head like he is going to do a sit-up....which I assure everyone he was not doing a sit-up then and will not ever be doing).   Dr. Tyler is of the opinion that he would like to go ahead and get the hernia taken care of as soon as possible before there are any complications.  Of course, the oncologist had said they preferred to continue with the chemo regiment and hope there would not be any complications with the hernia.  But, Dr. Tyler says if they can go ahead and get it taken care of now, there should be minimal disruption of his chemo treatments.  The procedure would be done laparoscopically and Joe should only be in the hospital a couple of days.  Many people have this done as an outpatient procedure, but with Joe's other health issues, a couple of days in the hospital would be a much better route to go.

So, next Monday afternoon we have an appointment with the surgeon on Dr. Tyler's team that would perform the surgery, Dr. Perez.  Hopefully his schedule will be flexible enough to accommodate the schedule preferred by our oncologists, Dr. Zafar and/or Leigh Howard.  Getting them on the same page might be the tricky part. Joe feels pretty good about going ahead and getting it taken care of.  We both have been a tad bit nervous about the possibility of the hernia causing complications with his intestines.  So going ahead and doing something to prevent that from happening seems better than just hoping it doesn't.  If there were to be an obstruction caused by the hernia, then it would be a much bigger surgery.  Although neither of us are thrilled with yet another surgery, better safe than sorry has never seemed more apropos.

We are so grateful for the continued prayers and concern expressed by so many people.  Thank you so very much.

And the Piano Lessons resume....

..at least for Joe's Durham students.  Joe resumed some of his Durham piano students this week and he also went to TGMC rehearsal for about an hour on Tuesday evening.  However, he did admit after rehearsal that it had really tired him out.  But I'm sure resuming some of his pre "Big C" activities gave him an emotional boost.

Tonight I had my MRI on my left foot & ankle.  Laying still for 30 minutes inside that tube was not my idea of a good time.  I'm sure it will be a couple of days before I hear anything from the orthopedist.

This weekend should be a quiet one for us.  A little laundry, maybe a nice restaurant on Saturday evening, church on Sunday morning and then "SHREK"  at DPAC on Sunday evening.   We will need the quiet weekend to prepare for Monday when Joe has 2 doctors appointments and is scheduled to begin his chemo (IV this time) again.  Next week will be one of constant vigilance to see how he is going to handle it.  Hopefull he will get through it as well as he did his first round of chemo & radiation with very little bad side effects.  Only time will tell about that.

Joe is very excited that his new CD, " A Time of Centering" will be available very soon.  Delivery is expected somewhere around Easter.  He posted some of the cover art on his Facebook account today so go look it up if you are one of his FB friends.

A Long Day's Journey into Insurance Aggrevation!

Today was Joe's follow up appointments with his surgeon and oncologist.  We arrived at Duke at 7:15am, with ice and snow pelting us as we waited for the valet to come park the car.  Yes, given the hour, the ice and my lack of ability to walk long distances with this boot on my foot, we chose to use the valet parking.  We checked in a few minutes early, within 10 minutes or so Joe was called for blood to be taken, 15 minutes after that they called him for vitals and 15 minutes after that we went back to an exam room to wait for his surgeon, Dr. Tyler.  But before Dr. Tyler came in, Dr. Richardson (surgical chief resident) came and took off the wound vac to get a look at the incision.  She was highly impressed and stated that she felt there would no longer be any need for the wound vac, just gauze dressing, but of course the final decision would be made by Dr. Tyler.  She said he would be in shortly and left us for awhile.   While sitting there waiting, Joe heard his name being called from out in the hall.  I was daydreaming in my own head and heard nothing.  Then lo and behold, we hear Joe's name being called in the hall again.  I go to the door and flag down the person calling him and tell her that he's already in an exam room.  Apparently, the oncologist was ready for him since it was now 9am and time for that appointment.  So the onconology NP, Leigh Howard, came in and talked with us about Joe's chemo options and the schedule for beginning.  Of course right in the middle of that, Dr. Tyler comes in, see's Leigh in with us and backs back out of the room.  I guess they don't want to overlap.  When Leigh was done, back came Dr. Tyler and Dr. Richardson, they looked over the incision, Dr. Tyler agreed that the vac was no longer needed.  Dr. Richardson then popped out the rest of his staples.  We discussed with them that Joe continues to have fevers off and on every few days even though he is still on his antibiotics.  They sent him for a chest x-ray, at the clinic building, and for a CT scan over at the hospital.  That is where my fun and frustration began (please note, the word "fun" is being used in a sarcastic fashion).  We retrieved the car from the valet at the clinic and headed over to the hospital.  Our intention was to use the valet at the hospital as well, but when we pulled in front, there was a large sign "VALET LOT FULL", so off to the parking deck we went.  Then the long walk through the underground tunnel, up the elevator  to the 1st floor and around to radiology where Joe checked in.  About 10 minutes later, Joe's name was called and we went to the financial office.  Apparently the CT scan had not yet been approved by Joe's insurance and in order for them to do the scan at that time, we would need to sign a waiver that we would agree to pay for the scan should the insurance company come back with a denial.  Did I mention that the cost was $4000?  Can you guess what our response was?  So off we went back to the elevator, through the tunnel and up to the parking deck and back home, with no CT scan.

Joe has a tentative appointment tomorrow night at 7:30pm for the scan but has to be there at 6:30pm to drink the contrast (YUK!)....I say tentative because we have not heard from BCBS yet.  Joe will need to call the financial office at Duke tomorrow late afternoon to verify that he has the approval. Otherwise, no scan, no resolution as to why the fevers.

And so tonight, I'm Big Foot again but Joe is pump free!!!!!

Disappointment with a capital "D"

Joe's insurance has been great....until today.  Now the battle is on to get them to approve the home version of the vac pump for his incision.  Seems they would rather pay out thousands per day for the hospital version of the vac pump than the couple of hundred per day for the home version.  Patient resources is doing their best to continue the battle so Joe can get out of the hospital....yes he is still here, unnecessarily.  Can you tell I'm a tad bit irritated? The only redeeming features, the staff here at Duke has been so great and I love the chicken tenders from the cafe!

Tomorrow I will go on back to work since it could possibly be another couple of days before there is resolution.  Better to just go through a regular day and hopefully just get a call to come get him.  I've had my operating instructions on the pump.  Joe just waits.

No Early Release....

Well I have had my instruction on how to cut the sponge to fit the open incision, insert the sponge in the open incision, cover the sponge in the open incision, cut the opening for the pump suction attachment in the sponge in the open incision, attach the suction to the pump and turn the pump on, while looking for a good seal and check for any air getting in.  Now if the Home Health care people would just get here and give us the "take home" model of the pump then Joe can get out of here.  If it had not been for the "pump" instruction, my day would have been better served at work.  I think Dr. Tyler was a little overly ambitious in thinking this would all be resolved today. So with all that said, we've had a typical day at the hospital.  I've had a running rivalry with Vanita, the "Queen" of the galley (i.e. food service and where the ice/water machine is for this floor) over her being a UNC fan.  The galley is her domain and no one dare enter without her approval.  We hit it off well when Joe was up here for his surgery and so I am one of the few that is allowed in there unsupervised by her, so we renewed our good natured Duke vs UNC barbs on Saturday.  Needless to say she was not happy yesterday while I was on cloud 9!  However, today, when I walked down to the book store on the lower level of the Morris Clinic and picked up my 2011 Duke ACC Championship shirt, she was the first person that I proudly showed it to.  She reminded me that a few drops of accidental bleach might permanently damage it.  Therefore, I have packed the shirt away where it is safe <G>.

Joe went for a 9 lap walk around the unit today (that's 1/2 mile).  I wish I had my flip camera with me, but the phone camera got a little taste of it.

Day 3 of 3rd trip to Duke

Today was a pretty good day at Duke as well, and I'm talking about Duke Hospital, not the whole ACC Championship thing....that I will save for Facebook!  I left early this morning and went home to clean up, do a load of laundry and visit with Dolly.  Joe's family arrived about 10:15am this morning.  His mom, Bettie, Brittany and Joshua.  I got back to the hospital around 11:30am just prior to Joe's lunch.  So while Joe ate, his family went downstairs and had their lunch as well.  I had picked me up something on my way back up to his room this morning.  Upon their return, I first took Bettie & Britt up to the 9th floor to see Joe's origami cranes and then I took Josh and Joe's mom up to take a look.  Although interested, I think Josh enjoyed the view of the Duke Life Flight helicopter more!  It was a good visit and Joe really enjoyed seeing his family and I'm sure it helped his mom & sister to see Joe in such good spirits too.

After they left in mid-afternoon, we walked some around the unit and went up to the 9th floor for Joe to see his cranes as well.  Then after dinner, we did another walk and all in all, although a pretty good day, he is a little more tired than usual and already asleep in bed.

Dr. Tyler has indicated that Joe will be going home tomorrow, but what time is anyones guess at this point.  He will be getting a special sponge & pump to go home with him as well as a Home Health care nurse to change/clean the incision.  However, I have been instructed that I will need to be present tomorrow when they demonstrate how it is done so if something should arise when the home nurse is not there, I will be able to handle it, or at the very least, not panic.  I'm SO looking forward to it.

Day 2 at Duke during 3rd Hospital Stay

Joe had a REALLY good day today at Duke.  Although I probably shouldn't say that since whenever I get real excited about how well he is feeling, along comes a set back soon thereafter.  But for now, he feels good and is doing so much better.  He ate well today, walked in excess of 10 laps around the floor of the unit, had visitors off and on all day, without any overlap so never did the room get too crowded which always seems to tire him somewhat, and I even washed his hair for him this evening!  They are now changing the packing in the open incision 3 times per day, so somewhere around midnight, Niki his nurse, will be in for that fun chore.  Speaking of Niki, when she came on duty tonight at 7, when she first came in the room after getting notes from the day nurse, the first thing she noticed were Joe's eyeshades hanging from his IV pole.  However, her thought was, and she said this out loud, "What is a fushcia bra doing hanging there?"  We all 3 busted out laughing as she realized what it really was.

We laughed so loud, the other nurses at the nurses station, which is just outside Joe's room, came in to see what all the ruckus was about.   Niki was Joe's night nurse last night as well and has been so wonderful and kind to us both.  Speaking of good nurses, the day nurse today, Crystal, was no exception.  She was so attentive we really did feel like Joe was her only patient, although nothing could have been further from truth as it showed 5 other rooms on the assignment board for her.

Crystal worked so hard for us today I just want to say a big thank you!  You were great and we really appreciated all your concern & attentiveness.

Joe's family is coming tomorrow morning so it will be good to see them again and I'm sure a big relief for them to see him.  Hopefully he will rest well tonight and will have as good of a day tomorrow as today.  That should hopefully help them feel better about things.

Right now I am watching basketball without the sound on, the rain sound machine is going and Joe has his eyeshades on and is snoring lightly.  I think he has drifted off to a deep sleep.  But in about 1 1/2 hrs, he and most likely I will be awaked for the changing of the packing & dressing since they need to turn the bright lights on to see exactly what they are doing (probably a good idea, huh?)

It's been a long day but the anxiety has been eased some by the excellent care and the fact that the little sparkle that is usually in Joe's eyes has returned some today.  It does my heart good!  

We have chargers!

AM update:  Thanks to one of our best friends, Lara, we now have our cell phone charges & Joe's eyeshades for sleeping.  Thanks to Carrie and other friends who offered to go by the house and pick them up for us!  You guys are the BEST!!!  So cell phones are charging and we feel connected to the world once again.

Also a big SHOUT OUT to Ethan Wood for the beautiful hand made get well card.  We have it posted on the wall at the foot of Joe's bed where he can look at it!!!  He misses seeing you too and can't wait to resume your piano lessons.

2 Weeks and 3 days after surgery and we are back at Duke

Joe started running a high fever this morning and called me at work around 10:45am telling me that he had a fever of 102.3 degrees and that he had called the surgeons office and they told him to get to the Duke Emergency Department ASAP.  So off to the house I went, threw a few necessities in a bag (or course leaving 2 very important things out - cell phone chargers & Joe's eyeshades for sleeping) and off to the ED we went.  We got there around 11:40am and by 11:55am we were in an exam room where Joe could lie down.  The nurse was in within 5 minutes and the Emergency Internal Medicine physician within 10 minutes.  Blood drawn, x-rays and a CT scan soon followed.  By 4:30pm, we had seen several doctors.  Then just before 5pm, Dr. Tyler, Joe's surgeon and 4 of his associates all crammed into the little exam room to take a look.  Apparently the scans showed that everything internally was fine but that a possible hematoma had occured near the lower end of his incision.  A hematoma is a pocket or localized collection of blood usually in liquid form within the tissue.  Most times the hematoma will just be obsorbed into the body.  However in this case it did not and a bacterial infection insued.  Therefore, Dr. Tyler told them what he wanted done, left the room and the chief resident started to work with the 3 other doctors watching and trying to answer the questions she posed to them as she got to work.  She removed the staples from his incision from about mid-way to the bottom, thus opening up the incision and exposing all the pockets of blood, or hematoma.  They used sponges to soak up the blood and then packed the open incision with sticky gauze packing and then a large dressing over it and taped it down.  The bottom line, Joe has a large mass of gauze stuck down inside his belly. 
We finally moved up to the 2nd floor surgical unit around 9pm into room 2112, just up the hall 4 rooms from where he was 2 weeks ago.  


After getting in the room I went to the parking garage to retrieve his toiletries and some clothes, stopped at the cafe on the 1st floor on my way back and picked us both up some dinner (neither of us had eaten today)  and Joe has currently settled into his extended length hospital bed and is barely able to keep his eyes open.  Barring interruptions, which I'm sure will happen every 4 hours minimum, I think both of us will sleep well tonight.  Maybe even make it until his breakfast at 9am.  Since both our phones are nearing the end of their battery life, if someone needs to call please try either Joe's phone (his has more battery) or call the room at 919-681-2112.   


It is now nearly midnight, the basketball game is over and we are going to sleep.


***PS*** 9am was just a pipe dream.  The first surgical resident was in just before 6am and removed the gauze packing from his belly, re-packed it and dressed it and left.  This was followed by the nurse doing vitals, giving him his paid meds and he is back off to sleep.  As I type it is 7am and Dr. Tyler is due in somwhere around 7:30am.  But since the nurses change shifts at 7am anyway, I didn't see any reason to even attempt sleep since there is always plenty of activity during the shift changes.  Joe however, after getting his pain meds is fast asleep again.  Too bad he's doomed to be re-awakened very soon.

2 Weeks After Surgery

I know, I know.  I've been negligent with posting on the website about how Joe is doing.  A couple of reasons for that. 1- There really hasn't been much to report.  He sleeps a lot either on the sofa in the family room or up in bed.  Sitting isn't his favorite thing to do, or at least wasn't until I brought the office chair downstairs to the family room.  It is higher with arm rests unlike the other furniture in the room.  That has made it easier for him to lean back in as well as get up to a standing position.  His appetite has generally been good except for a day or two.  Sunday wasn't a good day for him.  He slept for close to 15 hours that night and I had to wake him just before noon to get him to get up, take his meds and eat something.  He didn't have much of an appetite that day and by late evening, he was complaining of chills and had started to run a slight fever.  We kept monitoring his temp all evening and by the time he went to bed early Sunday night, it had come back down somewhat.  However, me being ever the "hoverer", I packed a quick little overnight bag & took a shower just in case we needed to make a late night Emergency Department run. But we didn't and by Monday morning when I got up, his temp was back to normal, blood pressure normal and he said he felt much better.  Yesterday and today he says he has felt pretty good.  His family was here last Friday and his sister spent much of the time doing our laundry. Thanks Bettie, that helped so much. My sister was here all day yesterday to keep him company during the day so I knew if he started feeling bad again, I'd have someone to call me right away.  She also managed to get in a load of laundry also.  Thanks Phyllis, that was greatly appreciated.  There's something about having wonderful sisters.  Reason 2 for not posting: Since he got home on Tuesday and I returned to my regular work schedule, I'm lucky to not be asleep on the sofa by 7:30pm.  Sad, but true.

We have been getting meals daily from friends and co-workers and EVERYTHING has been delicious.  I don't know how to adequately express our gratitude.  On weekends, I am capable of coming up with something, but during the week with my work schedule we would either be eating much to late for Joe to be eating or having lots and lots of peanut butter sandwiches!

Joe has his follow up appointment with the surgeon at Duke on Monday, March 14th at 8:00am.  We are assuming that they will take out the staples from his incision at the same time.  I think I will wait outside the exam room for that part!

Thank you again for all the caring words, cards, prayers and hopeful thoughts that have come our way.  We truly are blessed to have so many caring people pulling for us.

Origami Cranes

An ancient Japanese legend promises that anyone that folds a thousand origami cranes will be granted a wish by a crane, such as long life or recovery from illness or injury. The crane in Japan is one of the mystical or holy beasts , and is said to live for a thousand years. Over the past year Duke patients and families enduring the journey through the cancer experience have joined together to bring the 1,000 paper crane project to life.  To date over 3,000 cranes have been folded and are on display as a sign of encouragement. This joining of forces shows us that we are not alone.  Mine and Joe's sister-in-law, Sandy Okazaki, folded 25 cranes in Las Vegas and sent them to us to hang for Joe.  Each of the cranes has his name on them and they now join the other cranes in the lobby of the 9th floor which is the cancer floor.  Thank you Sandy, your love and caring for Joe is so greatly appreciated.

The cranes are so delicate and lovely.  Especially the ones made with the patterned paper.

Joe has been completely removed from all his tubes as of today.  No IV, no folley.  His pain level has increased, but most likely due to the fact that it has now been over 24 hours since the epidural was removed and his only relief are the 2 pain pills every 4 hours.  We walked a lot of laps around the floor this evening and he is currently sitting on the side of the bed tapping his feet.  Even after surgery, he can't keep from tapping his feet to the music in his head.  There are rumors that he might be allowed to go home tomorrow, but we are trying not to count our chickens before they hatch, so we will just wait and see!

5th Day after Surgery

This will be a really quick update as we are watching the Academy Awards and those that know Joe well know that this is his Super Bowl!  Today Joe had lots of visitors, both family and friends.  He has moved onto solid foods and has eaten well all day.  They took out the epidural late this morning, so no more morphine.  Now they have changed his pain meds to oxycodone pills every 4 hours.  The result, he feels the pain just a bit more than he has the last 4 days.  The end result, he only has 1 IV at this point.  Practically "disconnected"!  He walked 3 times, 3 laps around the floor each time.  

I did sneak in a few hours at home this morning, doing some laundry but mostly napping on the sofa (unintentional).  I guess if you are tired and you get comfortable, that's what happens!  Sort of messed up my morning plans however. Oh well.

Thanks to everyone who has called, emailed and visited.  You are helping to keep Joe's spirits high!