RECOVERY - WEEK 3, Friday UPDATED

March 30, 2012

Both daughters/partners are out of town this weekend, but Jessie and Matt stopped by today on their way to the mountains and we had a great visit.  Amanda was here yesterday, with a set of light weights and a "Superman" T-shirt for Peter ("Because he is," she said).

Today has been spent walking, mostly, and we finally made the trip to the dump, stopping by to see friend Gayle Dauverd and her new puppy, Baxter, on the way.  Her dogs (and Gayle) made Peter smile.

Small kindnesses mean a lot - and there are so many that I can't list them all.  But our mechanic, Tim Hull, dropped of my repaired tiller as a favor, and I finally got out to till some ground today.  It still seems a bit damp in the garden, and I don't have the hang of this rear-tined machine.  But it turned up some dirt.  I fully believe the science that shows that being dirty makes us happy...to a point, at least, and since my diet is all vegetables and fruit now, I figure I should grow some.  I am trying to squeak in some plants before it gets too late.

Our friend Joe Coates has been out here every day, coaching Peter through some of his exercises, encouraging him to walk, keeping him awake, and giving me a break.  Joe is a lot of fun to be around, and I've enjoyed the opportunity to visit with him, too.  His curious spirit reminds me a lot of my father's, and he is fun to explore ideas with.

I wrote my bi-weekly newspaper column this morning, and am about to go out and trim some donkey and horse hooves.  The day is just too beautiful to stay indoors.

Big night tonight...we went out to the Depot where a friend Sally Deaton's blues band is playing.  We didn't stay long, but saw a lot of friends, and Peter's backpack (with the pump) worked well.  The night out also got Peter to bed later...another help towards getting him off of his hospital-nocturnal habits.

 Despite having the larger, longer lasting formula bags, I found that the tube itself tended to get gunked up if I don't flush it every four hours.  Fortunately my old "dorm mother" skills of waking up and getting back to sleep are still employable, and the schedule isn't too rough.  I set the coffee pot at night so it is waiting on me in the morning.  And, fortunately, sleeping until 9 is an option if I need it.

Tomorrow is Peter's birthday and sadly the thing I'd ordered him didn't arrive.  But I've come up with another plan.  His email address is greenriverband@aol.com if you want to send greetings. 

RECOVERY - WEEK 3, Thursday

03-29-12

I am at the same place I was last night--- Oh yeah.  I haven't posted anything today. 

What I can report is that there seem to be incremental improvements each day.  The night was better.  I put some melatonin into the tube flush at bedtime, and I can confess that now since I told the oncology nurse today.  Peter isn't on any other meds, so there is nothing to interact with except himself.

That and the other tactics (no iPad, meditation) seem to have made for a better night.  Not perfect, but heading in the right direction if we can keep it going.

And he stayed busy again today...a road trip to the dump (which was closed), a stop by Underwoods for gas for the lawnmower (some sense of normalcy), and several walks, one with Joe, and another with Holli (who helps keep the barn running).

The vet came today for spring shots.  I sprayed weeds, dragged the arena, and Holli and I went for a run.  Now I have to write a column for the Chapel Hill Herald and right now I have no opinion about anything (very rare for me!).

If you're up for a visit, I think we're getting to that place.  Peter still has no voice, so you have to work on asking yes or no questions and doing most of the talking.  Taking him somewhere might be good.  His days need to be busy so he'll stay awake and sleep at night.  Come take a walk with him.

Best to communicate through email.  If you don't have his address, send a note here and I'll get back to you.

Thanks for keeping up with this saga. 

Susan

RECOVERY - Week 3, Wednesday

03-28-12

I suppose we can start counting the weeks now, instead of the days.  Surgery was on a Tuesday, the 13th.

I thought I'd written something this a.m. and wouldn't need to write tonight.  Darn.  I am tired, but not sleepy.  I think you call this weary.

I think last night was a little better, but not sure Peter would agree.  We came up with some other sleep tactics and hope they work tonight.  I am trying to stay awake long enough to add more formula and get myself to bed.  We have one of the larger formula bags tonight, so I should be able to sleep through for once.  No alarms last night, thankfully.

We kept Peter pretty busy and awake all day, and allowed him one 30 minute nap this afternoon.  He walked a lot, and did stretching exercises with Joe and meditation with me.  I see small improvements in everything but his mood.

Now has a chair in the bedroom and a plan to get up and read if he can't sleep.  No iPad within reach.

Hopefully we'll be home more tomorrow and I can write more.  Our big plan for the day is a trip to the dump with the garbage and recycling.

SG

RECOVERY - Day 14 end

Maybe this day was a notch above so-so, though Peter seemed to rate it lower.  His friend Joe Coates and I kept him busy and awake.  He puttered around the yard and got to town, with a stop by one of his favorite places, Dual Supply.

I went to the dentist and the grocery store...

...bought a lot for a household with just one eater!  I made a big pot of chili (spicy, the way I like it) in honor of the cooler day and night.  Better eat it quickly.

We'll see how the night goes.  Thanks to all.

SG

RECOVERY - Day 14

Early after Peter's diagnosis I had a work-related meeting with the Reverend Lisa Fischbeck, who said something that has stuck with me...that although Peter and I would be going through this journey together, our experiences would be very different.  That's true enough to seem obvious, but I had not considered it.  Remembering Lisa's words gives me the opportunity to step back from my own experience and consider Peter's.

That difference manifested itself last night.  I slept well, and only had to get up once at 3:30 to refill the formula bag.  Peter, on the other hand, was restless most of the night.  He was already up at 3:30, and I heard the sounds of his iPad a few other times when I rolled over into slight consciousness.  Though he is in his own bed, where he has wanted to be, the fact of sleeping "tethered" is difficult.

I think he is beginning to switch out night and day.  As soon as I took him off of the feeding tube this morning he took a shower, got back into bed, and fell into a deep sleep.  Yesterday he slept a good part of the day, and he has "closed his eyes" again just now.  A nurse I spoke with was quite firm about not letting the nocturnal habit develop, and so I've created a "busyness" plan for today.   It includes activity here (like putting laundry away), his regular walks (the nurse said bump them up to 5 or 6 a day), and accompanying me to town for my dentist appointment, grocery shopping, and a couple of other errands.  

The loss of voice makes things more difficult, because when Peter is around someone, he naturally tries to talk (whisper) and the doctors are telling him to rest his voice.  Being around people is good for him.  Talking is not.

A friend sent us the bible story from Luke about Zechariah getting his voice back when he named his son (John, as in The Baptist).  I sure I hope I don't have to have a late-life pregnancy like Elizabeth for Peter to talk again!  Surely there is an easier way..

Oh, and I love JTB's dreadlocks.

RECOVERY - Day 13, Long night, long day

All day I kept thinking about writing, but I was either too busy or too tired.  

On a good note, I found several 4-leaf clovers today, and a patch of some unusual ones that fool me into thinking they have 4 leaves, but they don't.

 

That first night managing the feeding tube and pump felt a little like a first night home with a new baby.   Peter isn't a baby, of course, but figuring out the timing of the formula, and having to wake up to re-fill it, and two other times when the alarm went off (the tube had kinked) felt a lot like those long-ago sleepless nights, and equally well worth it.

Peter used to be a very light sleeper, but the hospital taught him to sleep right through beeping alarms and people (me) coming in and fiddling with things.  At least I am not sticking him.

I learned the wake-up-and-go-back-to-sleep skill when I was an RA (dorm mother) at Hendrix College in AR and then here at Duke.  I think I once put out a small fire and fell right back to sleep.

I think we officially graded this a less than so-so day.  Peter doesn't feel well, but he did manage to get three walks in.  The first was with Amanda, and the second two with me.  I had to prod a bit for the third, but he was glad he did it.

Still no voice, so email him to get in touch.  

The night before Peter came home from the hospital I had planned to stay in Durham, but he went to bed so early it seemed silly not to drive on home.  Holli Crawford was farm-sitting, and together we managed to sign ourselves up for a triathlon in May.  It is a relatively easy one..with a 2 mile run, 10 mile bike ride, and 225 yard swim.  So today I took myself out for a run, and it felt great.  I didn't worry about speed (not that I ever do), but I just kept moving.  It improved my spirits considerably, and I hope that the sleep that I do get tonight will be deeper because of it.

My friend Rose Wilson keeps her horse, Virgil, here and was out riding today.  Rose has had her share of hospital visits, many of them as the result of horse activities.  She came up to the porch where we were sitting and found us feeling a bit glum.  Later she wrote this to me, and she really described the mood we were sitting in:

I was telling John about how Peter was doing, and he and I both remembered that big emotional letdown after coming home from the hospital. It’s as though you have to be holding it together while you’ve got the hospital staff around you all the time, and you’re having to be cooperative with what they’re doing for you, and then when you get home and can let go a bit, all the feelings of weariness, sadness and anxiety come flooding in. I know he knows that he just has to let them come--going with the flow is the easiest way through. I expect you’re feeling much the same, Susan.

I think we both felt better for having had Rose articulate what the day felt like.

I just re-filled the bag with the formula that feeds Peter through the night.  We have 5 hours before it needs the last two cans.  Time for us to try to get some sleep.  Hoping for no alarms.

RECOVERY - DAY 12, GOING HOME!

We have a new favorite doctor, Betty Tong.  She has many wonderful attributes, but the most important right now is that she paved the way to, "Get the *&%$ out of here."  Today!

Peter doesn't cuss much, and rarely uses the word indicated above, but that phrase became his mantra yesterday.  If they had not given him permission to leave today, I think he'd have walked out on his own. 

I got here early, and when the docs came by on rounds we were ready with questions.  They really don't send you out of here with too many instructions.  No swimming or bathing, but showers are fine.  Peter can't lift anything heavier than a gallon of milk.  Despite the fact that he's been off of all pain meds for several days, they don't want him to drive, and the riding mower is probably too bumpy for a while.  But long walks in the woods are called for, and Peter can't wait to be in his own bed.

He is coming home without his voice.  A few of you  said you'd missed this part of the blog.  The tube they put down his throat for surgery irritated his vocal cords and the nerve that serves them.  And part of the surgery itself requires stretching the left cord.  So Peter can only whisper, and is advised to speak as little as possible.  He can't talk on the phone. They'll re-assess the situation when we go back on April 10th, but most likely the problem will resolve on its own.

They were able to get Peter on a 16/8 feeding schedule.  That means that he'll be untethered from 8 a.m. until 4 p.m., and back on the pump from 4 p.m. until 8 a.m.  Our nightlife out at the clubs of the Triangle will suffer, but we can manage, I think, until April 10th.

RECOVERY - Day 11 - Restless

Saturday, March 24, 2012 (Morning)

On the advice of a surgeon friend, and because Peter can't sleep in the hospital, we pushed back a bit today and told the doctors that he needs to go home.  We'd even hire a nurse if needed.  So now I am waiting for a call with details, and they're promising that he'll go home tomorrow.

What they're doing is trying to get the tube feedings on an on/off schedule so he can be off the tube during most of the day.  That sounds good.  They're also watching his lungs since the chest tube just came out yesterday.

That's the short report.

RECOVERY - Day 10 - No Cancer!

FRIDAY
Today we asked about the pathology report because it had not been shared with us and was not on the website with other reports.  While I went to lunch the doctors came round and delivered good news...that the report was good!  I need to find out the details of what that means.  But if the doctors say "good" we're accepting that as very good indeed.  Another big "whew."

We took a long walk today without the walker, and without any tubes.  If you have reason to be at Duke, ask me about places to go and shortcuts.  Today Peter wanted to go to the cafeteria, and the food was appealing to him, which is sad because it will be 3 weeks before he can eat any.  Following the chemoradiation he didn't want to eat, but needed to, and now he wants to eat, but can't.

I forgot to tell you that yesterday he clowned around with the walker, climbing up on it to ride it down an incline in the hospital hallway.  I had to run with the pole.

Today I couldn't get a clear picture of him walking untethered because he wouldn't stop.

 We walked out behind the cafeteria, around behind the Eye Center where there are some picnic tables (and we sat a while) and then past the window to his room, down some stairs, and back into the front (main) entrance of the hospital.

RECOVERY - Day 10, Tube Count Down

Friday March 23, 2012

Just a quick morning report that the tube count went down significantly today.  THE CHEST TUBE IS GONE!  Only the feeding tube remains, and they are trying to get him on a  12-hour on, 12 hour off schedule (or even 16 on, 8 off), with most of those "on" hours spent sleeping.  Now they're talking about home on Sunday instead of Monday.  Hooray!

RECOVERY - DAY 9, Long Days and Fire Department

March 22, 2012 - Thursday

This was one of those days that was so busy it seemed to pass quickly, but now seems really long from the "looking back" perspective.  These are the days that you just slog through.  Peter's spirits have flagged, things don't change significantly (or enough) from day to day, and all the P&P continue.  The fact that he can't talk (something related to the tube in his throat during surgery) makes it all the harder.

I ended yesterday's post telling how I'd lost my car, but forgot to say how it began - with my getting stopped for speeding on Pleasant Green Road.  Oddly, the officer asked me if I had a reason for speeding, and I told him I was going to the hospital, though it wasn't for an emergency.  Maybe that's why he let me off with just a warning.  That road is 45 the whole way, and it is very easy to let your speed creep up, especially when behind another car.  Lesson to be learned...if you're going to speed, be the first in the pack, not the last.

Peter hasn't felt like writing here for some time, but he is letting me copy what he wrote in an email to his college buddy, Scott, about what happened last night (Wednesday).  First, thanks to Carol McLaurin for suggesting the iPad, and to Matt Dudek for setting it up for Peter.  It has been a life-saver.

[From Peter]  I had to laugh when I read your message late last night, especially the reference to being "untethered." Actually I'm always tethered, sometimes less so. But last night, feeling otherwise depressed because I can't sleep here, I got in a great, almost manic mood listening to music on the iPad. The song "Every Time I Roll The Dice" by Delbert McClinton was on when I got up to switch from the bed to the chair. This is a song my band Green River just played at a ten-year reunion recently. I was actually dancing, then noticed blood. I had messed up an IV, not badly but enough to have to call a nurse. Blood well-spent spilling.

Amanda started the day with Peter (before I came), and Jessie came in the afternoon when she got back from her photo-shoot in Boston.  The three of us spent a long while in the courtyard (outside),  so long that Peter's nurse was getting worried about him.  I'd like to think that the sunshine and the gum-chewing (cited on PubMed) helped get Peter moving in the right direction, but probably the medication they gave him had something to do with it too.

They brought all the home equipment for tube feeding, taught me how to use it, and tonight the nurse let me flush the J-tube and give Peter some Tylenol through it.  He is off of all narcotics now.  The chest tube is coming out tomorrow, so the "tube count" will be down to one unless something changes.  But that last one is coming home with us, and will be with us at least until Peter's follow-up appointment on April 10th.  Nothing by mouth (except gum) until then. Yikes.

I stopped for the second night in a row for the same curry dish, and brought an extra to Holli Crawford, who was here riding and feeding the horses for me.  I asked my friend, Gayle, if it would be bad to eat curry dishes 7 days a week, and told her that this place would give me brown rice.  We agreed that you can't really O.D. on this stuff.  It is all vegetables.

While Holli and I were eating in the back of the house the dogs started barking out front, and we thought we heard the donkey bray, but it didn't sound quite right.  I walked the front door and there were bright lights flashing (we live 1/2 mile off the nearest road), and an arc of white shooting out over the pond.  The fire department was here!

Years ago we let them put a dry hydrant on the pond, and they have to flush it and test it at least once a year.  Some years they come get water for fires, but they come so rarely that we don't think to tell house-sitters about the possibility.  Fortunately for Holli it happened when I was here to interpret the weird scene.  I couldn't quite capture it on film, but here's my attempt.

Looks like Peter will spend the weekend at Duke and go home Monday (hopefully) or Tuesday.

Thank you all for all the kind offers.  I'll be taking you up on some of them as I prepare for Peter's return home.  Can't wait!

RECOVERY - Day 8, Sunshine, Lost

Wednesday 03/21/2012

Tonight was the first time I lost my car, and I guess I am surprised it took this long.  It took me over half an hour to find it, even though I could here the horn beep when I pressed the button on the key.  And when I found it I swear it was right where I had been looking.  The gradual climb of the floors of the parking deck is confusing.  It was a long end of a longer day, but good exercise.

Wanted to report that we did make it to the great outdoors this afternoon, but I had to keep asking for permission.  As we rode the elevator down from the third floor I realized that I had my car keys in my pocket, and had an urge to just load Peter up and go, but decided that wasn't a good idea.  Since I couldn't find the car, it would have been terrible.

Peter was able to walk "untethered," and enjoyed a good sit in a spot of sun in the courtyard (above, from another day), and then a walk down the sunny hallway that connects the clinics with the hospital. 

Earlier in the day I turned his chair around to face the window.  When he asked me what road that was (Erwin), I was startled to realize how closed-in his world has been for the past 8 days.  The brief escape was good, I think.  I hope we can repeat it tomorrow.

In your prayers and wishes and vibes, think "movement." His systems are sluggish, and are slowing everything else, like plans to get him home.

When Peter wanted a mirror to shave today it occurred to me to use the camera on his iPad.  Worked like a charm.

Thank you all for your cards.  Peter enjoys reading them.  Since he can't talk, still no visitors.  That time will come.  Thank you all for everything. 

RECOVERY - Day 8, The Farm Report and More

Since Peter must rest his voice, we've relied more on email than ever.  I've had two from him so far this morning.  One confirmed that he'd had an OK night and he would like a change of scene, and the other reported that he'd walked 8 laps (almost half a mile) solo.  That's a first.  Let's hope for a patch of blue skies and a pass from his doctor to go outside today.

And on the home front I was pretty sure I'd captured the feed room wrecker because I could hear our hound dog baying all night...fortunately not too loudly over the soothing racket of our attic fan.  Sure enough, there was a raccoon in the cage.

Finally, those of you who have followed my columns over the years, or have followed me around know that our daughter Jessie is an expert at finding four-leaf clovers, and I've apprenticed with her a bit.  They're more abundant than most would guess, and they do seem to cluster somewhat.  I found two this morning.

I hope that these are an indication of a good day unfolding.

Recovery Day 7 - Two Steps Forward And...

...the inevitable one-step back.  OK, it felt more like two.  The "tube count" (as our dear friend Watty Bowes calls is) went up, and the prescription for future nutrition  called for an adjustment to what "going home" will look like.  But at least they're talking about going home. 

Peter told the social worker that the hospital was starting to make him sick.  Sleep is constantly interrupted, the bed and chair don't suit his back.  He has a window with a decent view, but faces away from it 100% of the time (rearranging the furniture isn't easy, but I am going to try).  Alarms go off continually, and then all the P&P. 

We've had a week of glorious weather, but Peter hasn't been beyond the triangle of these three hallways cluttered with medical machinery and populated with sickness. Today I went to his nurse and told him I wanted to spring Peter out of there.  I've seen patients in the courtyard with their IV poles and as many or more tubes as Peter has. 

One has to tend to the spirit as well as the body, and healing can come via warm sunshine and a gentle breeze.  So we've officially requested a "pass" to the great outdoors, but I fear it will come just when the rains do.  Well, we'll sit under a shelter if we have to, and go again when the sun is shining.

Family member Matt Dudek came to walk with Peter after work this evening.  We passed in the lobby, and I drove on home.  As I came up the driveway to the house I thought, "something's changed."  Then I sniffed the air and caught the scent of fresh cut grass!

Members of the Schley Grange Hall, organized by Katherine and Milton Cheek had come and done a bang-up job, mowing our huge yard and down the sides of the driveway, too.  It was almost dark (as you can see from the picture), but it looked heavenly, and I know that Peter will feel good when he sees the pictures I'll snap in the morning light.  THANK YOU!

 One other bit of farm news:  Some critter has been playing havoc with the bags and cans of grain in the feed room of the barn.  I borrowed a have-a-heart trap and have had it set with goodies, but locked open for the last two nights.  THIS is the night to spring it.  I've secured all of our cats, put fresh food in the trap, sprayed WD-40 on all the moving parts, and set it to catch the varmint.  I'll post a picture in the morning if I am successful.  Then I'll have to figure out what to do with the critter!  I don't suppose taking him to Duke would be a good idea...they do have gardens!

That's all for now.

RECOVERY - Day 6, What a Difference a Day Makes!

Two tubes out today.  Peter feels so much better.  I came in a little later this morning, and he walked 10 laps...the most for any one walk.  That is more than half a mile.  It is almost 4 and he'll walk again soon, and then again in the evening.

Clothes!  With the tubes out they said Peter could put on pj pants, so I scooted over to the Med School book store and bought him some scrub pants and a pair of lightweight sweats.  The manager got really into helping me when he found out my cause, and picked out an on-sale Duke Surgery shirt for only $8.

Just finished giving Peter a sponge (wash-cloth, really) bath and he put on the real clothes.  He looks like himself again, and even let me take his picture to show you.

Yesterday (or Saturday...I forget) I commented that just when things seem bleak, the turn-around is not far ahead.  Still some distance to cover, but today is definitely brighter.

Recovery - Day 5, Almost Tomorrow...

Thanks again to Amanda and Alejandro for covering this morning so I could stay home a while.  Jessie took Saturday evening so I could go home early, and Matt is scheduled for the coming week.

So far family only. Peter is not up for visitors.

To repeat, Peter is doing great medically, but he feels just awful and the cumulative effect so of so much poking and prodding and pain is taking a toll. 

Today's big news is that his gut is waking up, and they've started the tube feeding.  I think that will give him more energy, but for now his body is adjusting.  I read the ingredients of what they're feeding him and shouldn't have.

The other good news is that we loved today's nurse, Courtney, and she'll be back tomorrow.  That's only the second time that a nurse has returned.  It is hard to adjust to a new person every day and every night.

The really big day will be when the chest tube comes out.  With that several other tubes will disappear.  They'll do a swallowing test and he might be able to start taking some nutrition by mouth.  Soon-- but we don't know when.

On Friday (I think) I asked the surgeon's PA to tell me the name of the surgery so I could write it down.  Turns out I was writing THEM down (medical friends, correct me if I have something wrong...he talked fast).  The first is called EGD - esophagogastroduodenoscopy.  Then VATS -(video assisted) right thorocoscopic mobilization.  Then the McKeown esophagogastrectomy, and finally the feeding jejunostomy.  After all of that you'll understand why this is such an ordeal.

My time with Peter started a little rough today...he'd endured about an hour of more poking and prodding (let's refer to it as P&P) before I got there.  We tried to walk but the tubes were tangled and one was very short, so it was really hard not to hit his heel with the wheel of the rolling stand that holds all those meds.  Still managed 4 laps, then Courtney's patient de-tangling that involved a bit of moving around...and a bit more P&P.  The new tube requires and every six hour blood sugar test...more P&P.

Then he fell asleep, so I tried to find some food at the hospital (no luck...every veggie had butter on it), so I went for a walk in Duke Gardens.  It is waking up right along with Peter's belly.  Here are some pictures to close with.

The last picture is of the petals of a beautiful tree on the ground below.

Finally, many nights when I leave Duke I turn right (instead of left) and head to Whole Foods for some nourishment:

If you read my newspaper column today: http://www.heraldsun.com/view/full_story/17912087/article-The-comfort-and-joy-of-being-known  you'll know that I mentioned Vickie Jamieson-Drake.  Tonight I ran into her again at WF, and shortly thereafter, saw son-in-law Matt Dudek and talked him into a quick dinner.  He's a good listener.

Thanks to you all for so many amazing messages and offers of support and help.  We'll be able to take you up on some of it soon, we promise.

Recovery - Day 5. Will post tonight

Amanda and Alejandro visited Peter early this morning and I had my first long morning at home since the surgery.  Just puttered around the barn and house doing what needed doing.  Heading in now, without my computer, so look for an update tonight.

RECOVERY - Day 4 - BORING

This morning the doctor told Peter that it is good when he is bored because that means he's on the mend.  I suspect that means that these reports will get bor-ing...because there isn't much new to tell you.

We're hoping some tubes will come out by Monday.  Peter walked 6 laps this morning because we determined that 6 x 3 is better than 9 x 2.  He's starting to get hungry, which could mean that his gut is starting to wake up, that sleepyhead. When that happens he can get tube fed (oh joy).


There is a disconnect between how well Peter is doing medically and how he feels.  The word "cumulative" was used a lot with chemo and radiation.  I think it is applicable with recovery, too.  It all takes a toll, and the words "You're doing great!" don't match the reality of his life in this little room attached to all these tubes.


But I've learned in life that just when things start to seem bleak, there is usually a turnaround ahead.

That's about all the news from here.

Recovery Day 3, Good Night

This journey is really is a roller-coaster of moderate highs and lows.  Peter took two walks of 9 laps each = one mile.  But on the second walk, with Jessie, he began coughing.  Medically this is good, and probably the result of all the walking and breathing exercises, and will clear his lungs.  Personally - it hurts.  Nurse Stephanie said a mile was plenty, and he could forego the 3rd walk.

Today he simply tuckered out before 7pm.  I got his bed into the right "shape" for him, and Stephanie helped him get settled.  For once I got home before dark.  Holli had the horses fed, and Gayle brought us curry from Twisted Noodle (yum).

When I got home I found some lovely letters and one with a prescription for hot tea (mmm) and a "petty cash fund" for me to use for whatever would bring comfort.  What a lovely idea!  I figured I'd already spent most of it on the hotel room (which brought SO much comfort), but it made that decision seem all the more right.  And I realized that I'll accept this kind gesture and "pay it forward" to someone else in need of comfort in the future.  Pretty amazing.

By leaving early I didn't get to meet the night nurse, and won't get there before shift change tomorrow.  I called  in later and he (!) seemed great.  I will be able to sleep well, I think.  Every day it gets easier to be gone a little more.

Wondering what Recover Day 4 will bring?  Day 3 needs to roll on towards sleep.

Recovery Day 3 - Midday

Let me begin by following the excellent advice of a good friend in the medical profession who urges me to focus on the positive.  I will say that the care here has been, overall, excellent.   My friend says that for four things done wrong there are hundreds and thousands done right...so many that I couldn't even imagine, and I believe him.

Peter has had a wonderful nurse two days in a row--Stephanie-- and feels in good hands.  Last night's nurse, Virginia, kept in touch with me so that I felt good  to go home for the first time and come in a little later this morning. I am usually a "glass half full" type of person, but the fear and anxiety of the past few days (months!) do take a toll.

Today has been great so far.  Things just seem under control overall.  Peter walked 9 laps (half a mile) right off the bat when I got here this morning.  Take a look at the chart: 

I just checked the math and, yes, 18 laps make a mile. He is walking with Jessie right now, and perhaps Amanda can follow him around this evening.  Here' the walker: 

And Jessie pushing the pole:

If Peter were in street clothes he wouldn't look sick at all.  His pain is under control, and everyone is waiting for his "gut to wake up," but  they say it isn't oversleeping.

We had a long friendly visit from PA Scott Balderson and I asked him, "Scott, when can I take a deep breath and say "whew?"  He told me that he thought I could do that right now, and I felt tears of relief pushing behind my eyeballs.  There are a lot more days ahead, but this one is very good.

Recovery Day 2, Evening now

No one told us that days in the hospital were so very l-o-n-g.  Peter walked 13 laps today which they would say is almost 3/4 of a mile, but somehow I doubt that.  But never mind, it is 13 good laps, and Dr. D'Amico told us that walking is the best thing for recovery.  Today's laps were harder  because of pain.  They've upped his meds again a bit, and he is pretty comfortable now.

This is the wing where heart and lung transplant patients are cared for...so it is a petty intense place.  The windows of the hallway look down on the courtyard where Jessie, Amanda, and I waited on the warm day of the surgery. 

   

It is after 8 p.m. and we're waiting for the night nurse to check on a couple of concerns.  Things aren't as spot-on so far tonight.  I've checked out of the hotel that is just a 3 minute walk away.  I hope that wasn't a mistake.

As far as mistakes go, there have been four that I know of.  I'll list them below, but am editing what I wrote before to note that many, many more things have gone right:

The first was getting Peter out of bed too quickly the first morning after surgery.  The second was the member of the "Pain Team" who forgot to turn the pump back on after she adjusted the dose (he went 3 hours with no drugs into the epidural).  The third was the nurse who told him that yes he could put ice in his mouth.  I double-checked with the doctor and the reply was an emphatic "no."  The fourth was the respiratory therapist who almost gave him a "breathing treatment" that he didn't need.

I was here for those mistakes.  I don't know what I might have missed, but am having to realize that no one person can keep a complete watch. It takes everyone working together.  It is back to the "Leave the driving to us," scenario, except that here they change drivers every 12 hours.  So far we've only had one repeat.

Tonight's driver just came in...a new one who was reassuringly competent and answered our questions.  In a bit I'll venture home for the first time.

Recovery Day 2 - Good Morning

I had an email from Peter at 6:23 a.m., which I took as a good sign...he had to be out of the bed to send it.  I hustled to be here by 7, since so much happened so early yesterday, but today is a bit slower.

Still, his nurse came in and removed the bandages on his neck and belly, and those look really good.  Someone else came by to weigh him (193, not bad, considering), then the surgical team came by (they just look at him from a distance and ask a couple of questions).

Then Stephanie again for more meds, and then to get him up an walking.  He just completed four laps, which he said were harder than yesterday's because he is feeling the belly wound more with fewer drugs at work.  Once Stephanie gets him untangled, up to the walker, and all his tubes ready-to-roll then my job is to follow behind him pushing the pole.

The other happy news is that his voice is better.  It isn't normal yet, but definitely better.   That's the morning report.  Peter is napping, and I am going to do the same.

RECOVERY, Day 1 - Goodnight

I hope that Peter is sleeping.  He only gets checked every 4 hours tonight, which is a lot less interruption.  But he's a lot less doped up, and was having a hard time getting comfortable for sleep.  He has to be pretty upright to prevent pneumonia, but that arches his lower back, so his nurse Tia and I experimented with an array of pillows in various arrangements.  He was dozing off as I left.

He walked a second time in the late afternoon and made five laps.  If their measurements are correct that's half a mile or better.  That's the length of our driveway.  I never thought anyone could walk that much on the day after major surgery.

His doctor had told us that if he comes up for rounds and hears that a patient is walking a lot, that's all he needs to know...meaning that walking is both the prognosis and the cure.  If a patient is walking they'll be OK.  Let's hope that's true.

I still need to list all of the amazing encounters from yesterday, but will try to find the time (and brain cells) to do that tomorrow.  I feel much better for having had good food today, and hope I'll sleep as well.  I've learned to get up early and get to the hospital while things are popping.

Thanks to everyone for the good wishes, prayers, vibes, and love.  You don't know how much it has meant.

Susan

RECOVERY, Day 1, 1/4 mile walk this afternoon!

People tell me that they check the blog repeatedly, so I will try to write as frequently as possible.  Left to my own devices I'd probably put too much medical detail in here, simply because it interests me.  I'll try to spare you.

As I write it is 2:15 and Peter is sitting up in the easy chair and dozing away.  He has always had a knack for sleeping sitting up, even though he is a light sleeper.  He can sleep with his head held completely upright.  This has served him well on the few long plane rides he has taken.  Getting him into the chair held none of the drama of the morning.

They lowered the amount of pain meds into the epidural by half because of the fainting spell this morning.  That particular drug can lower BP.  But that means that he is now feeling some pain at the incision site, and they don't want pain to interfere with deep breathing.  So the "pain team" is coming back to evaluate him before he takes his first walk.

3 p.m. now and the first walk is complete.  Beforehand they discovered that someone had not turned the "pain pump" back on, so Peter had not had anything except Tylenol since 11 a.m.  That would account for the discomfort!

They got the pump working and got him up for a walk.  They have a special walker that looks like a chest-high padded shelf with stick handles, so his forearms rest on the padding.  Walking is what you do up here, and there is a circular route around the floor.  At one turn they have "mileage" signs.

Once Peter got up (which hurt) he was unstoppable and made it around 4 times at a pretty good clip.  According to the chart, that is 1/4 mile!  His nurse, Hollie,  had to "suggest" that he could go back to the room now and do more laps later.

While Jessie was here I navigated my way through the maze of the hospital back to the Refectory Cafe (in the Divinity School) for some real food.  They had Dahl, which made me very happy, and fresh steamed broccoli and sliced oranges for dessert.

 I took an outdoor route back and discovered that the radiation clinic which Peter visited 5x a week for 7 weeks, had moved.  It is in the sub-basement, and it was a bit eerie walking through the deserted halls.

Otherwise things are much quieter than the hustle-bustle of the morning.  He's happily into the iPad for the first time since surgery, so I will slip out soon for a shower and maybe a nap.

Recovery, Day 1, Morning

The view from Peter's room.

WOW.  This place is busy, and I am going to get a book to write down everything they're doing.

Peter is really fine, and resting comfortably now.  But we had a scare when I first got here and a man showed up with a wheel chair to take Peter down to x-ray for them to look at his chest tube.  He had not been up at all since surgery, and they sat him up, rearranged all the tubes, and then had him stand and take a few steps to the wheel chair.  He got nauseous, which is normal, and then got very unresponsive, though his eyes were open.

Our anesthesiologist friend, Bret Stolp (he has wings but keeps them hidden) happened by at that precise moment, and took charge.  Helpers emerged from everywhere, and they got Peter back in bed where everything normalized very quickly, and Peter is perfectly fine now.

He is dozing between the interventions of the many people who come in here (RN, pain management team, respiratory therapist, Drs. on rounds, PA, surgical team, etc.).  A few minutes ago he woke up and said "I am feeling better."

They have an easy chair all ready for him to move into, and that will be important.  He has to walk 3x a day (longer and longer each time), and do the "Incentive Spirometer," which is a breathing exercise 10x an hour (all at once, fortunately, and not every 6 minutes).  For these few minutes, things are quiet.

Peter can't eat or drink anything for a few days.  He has these little sponge "suckers" that he can dip in ice water and moisten his mouth, but not swallow.  The danger of aspiration is what they're trying to avoid.

Peter's surgeon friend Evan Rashkoff called soon after the wheelchair incident and assured me that what happened is not uncommon.  It is reassuring to have professionals like Bret and Evan to explain things in more detail.  The machine just took his bp, and thankfully it is up!

This is the morning report.

LAST NEWS OF THE DAY

They moved Peter to his room about 10:30 and I walked over to see him.  He'd had them call me to bring his glasses, but he didn't need them right away.  He keeps saying that he has no pain and is amazed by that.  He had me read him his emails and all the responses to the blog and then, just like at home he said, "I am going to sleep now."  And that's what he did.  I talked to his nurse (Tia) and came on back.  He's on the wing with heart and lung transplant patients, so they're used to watching closely.

I stopped to get something out of my car and was grateful to see an unopened bag of blue corn chips in there.  Duke is such a food desert, and my dinner  (at Six Plates) was hurried and small.  I sure could use a cold beer to go with these chips, but I just didn't have the energy to get in the car and go anywhere.

Here are a few pictures from the day.  I was SO happy that the "Vegetables of the Day" sign was still up in the cafeteria.  Notice Thursday.

Jessie kept moving with the sun.

The sky was stunning all day.

The link to reality.

Thursday's Vegetable of the Day is...

It really is spring

And I do think that the beauty of the warm day and the nice courtyard made the afternoon wait so much better.  Here are a few pictures for you.


Now the watch is for pneumonia which would be caused by aspiration since everything from just below Peter's throat has been re-arranged.  He was thirsty, but can only have these little sponge suckers that don't have enough moisture to swallow.  He can't have anything by mouth for quite a few days, and will have to be extremely careful for several weeks.

Since I want to be up early to see Dr. D'Amico on rounds, "I am going to sleep now."  But unlike Peter, it will take me a while to get there.

Thanks again to everyone.

Susan

Follow Up Post Surgery

We had a little trouble with posts from Peter's ipad, but working from the laptop now.  That's why they seem out of orderl

We had time for a quick meal, and of course the hospital called while I was finishing.  I dashed back to the hospital while the girls and Matt finished up, and sprinted up to the 3rd floor.

Peter is amazing!  He is in little to no pain thanks to the epidural, and he was talking up a blue streak and cracking jokes.  The girls got to see him, too.

After coming into the room and staring at Peter for a few minutes I looked up at the nurse and asked her name, and before she could answer I realized I knew it...Laurie Hanigan, whose daughter, Gracie, was in Pony Club with Amanda.

Laurie was super, explaining all kinds of things to me and promising that she wouldn't let him go up on the floor (private room) until she was sure he was good and ready to go up to the floor.  I like that!

But she just called and apparently he is ready.  I had a nice bath and a little while to stretch out, and am going to walk back over.  It is nice to be so close.  I have to get up early to be there when Dr. D'Amico makes his rounds.

Lots of little posts today.  Later I'll tell you about all the people we've run into that we know up here.

Thanks, ya'll.

GOOD NEWS

Peter is out of surgery and all is well! Dr. D'Amico is pleased. We ar waiting to see him. More later.

Just heard from the OR again...they are prompt! News is, "They are
still working." Doc said 5 hours. Everyone else said 6. Even then
there will be a wait to see Peter.

We have spent the day outside in a garden courtyard. Will head back up
to the crowded waiting room in a while. Thanks to everyone for
prayers, vibes, good energy, and candles.

Jessie and Amanda have been here the whole time. I remind myself that
this will be the same amount of time as a drive to DC, hopefully with
no traffic jams. I think our next update will be in person. Will post

Update: got a call at 2:25 that they were still working. I asked if that means everything is ok, and she said yes. Not much to go on.

Surgery began at 12:12 pm. Peter was in good spirits. I am in the Courtyard Garden with Jessie, Amanda, and Janet Stolp. More later.

[BY SUSAN]
Well, folks, surgery is scheduled for 11 tomorrow.  We will show up at 9 and I don't know what happens after that.  Jessie and Amanda I will wait together for the bulk of the time, and I always take way too many books, knitting, magazines, etc.  You'd think I was sitting there a week or more if you peeked into my backpack.


Surgery is typically 5 hours.  Our friend Bret Stolp, an anesthesiologist at Duke, called today to tell us that we have a top-notch anesthesiologist in addition to top-notch surgeons. Like I've said before, I've been pleasantly surprised at Duke.


We have the farm covered thanks to Holli and Leon.  New cats are settling in, and the horses are in a routine.  The warmer weather will make things easier...no blankets!

Last night all the children came out (two daughter, two partners), and we had a great time.  Jessie's partner, Matt, helped Peter select music for his iPad from my iTunes folder and download some that they had given him for Christmas/Hanukkah. It took a while (I have a PC and he's an Apple professional), and Peter and I were both impressed with his patience and willingness to stick with the long process.  Thanks, Matt.

Peter chose to purchase a Sly And the Family Stone album, and when he began to sing, "Stand!" I realized this will be the perfect song to play when he needs to get up out of the bed and doesn't want to. 

Now we need to find a walking song.  Any suggestions?  I love Tracy Chapman's "Talkin' About A Revolution," where she says, "You gotta run run run run run run run run run...."  But we don't want Peter to run, just walk.  He LOVES song lyrics, so make him smile with something about getting up and walking.  Alice Gerrard has a great one that says "Get up in the morning and do right..." 


We've tried to be light-hearted through all of this, but we're pretty nervous and scared.  I am thankful to have had so many things to keep me busy and distracted over the past week,, but I can't keep that ruse up any longer.  This is real, and it is tomorrow.


Please remember the "no visitors" request from the hospital, and us.  We'll rely on this blog to keep you updated initially.  Thank you again for all of your kindnesses and incredible support.

Leave the Driving to Us

[BY SUSAN]

I guess we're counting down.

Most likely we're trying to avoid thinking about what is looming on the horizon.  I am focusing on transitioning out of my workplace, The Johnson Intern Program, Inc., which I have directed (with lots of help) since 2005.  Over the years we've graduated over 60 alumni, and now one of them, Tricia Lindley (08-09) has come back to run the program in my absence.  We have only three days to work together, but at the end of the first (today) I know that everything is in great hands.

Tricia and  other leaders like Watty Bowes (board chair) and alumna and board member Katie Thompson, plus too many others to mention (if I started I couldn't stop) have supported me through this difficult time and have made it (almost) easy to step away.  Our alumni, both local and distant, have stepped in to help out as well.  And Ebeth Scott-Sinclair, Solita Denard, Susannah Smith, and Liz Dowling-Sendor have been there for me in more ways than I count. During a particularly difficult time Pat McCarthy made me laugh, and Darryl Owens reminded me to breathe.  Both actions are critical to survival.

Since turning the corner a couple of weeks ago, Peter has felt great, has gained weight, and lately has focused on taking care of so many details on the farm.  The road looks great, the fence is fixed, firewood is stacked, and tomorrow a new sheet of tin will be nailed down on the old barn roof.


I'll be at work until Friday, then have Saturday, Sunday, and Monday to clean house, catch up on laundry (the skill of folding has eluded me lately), pay bills, and do some research into the ordeal we'll face on Tuesday.  I hope that the weather holds out so I can ride my wonderful horse, Twill, and maybe take a bike trip out into the country or on the American Tobacco Trail.

While cycling through the many people we saw at Duke last week a couple of  funny things happened.

First, we were both shocked to find ourselves in "Pre-op"  on Thursday.  The first nurse we met was was a good friend of a friend, so we got to run through all connections and shared experiences we'd had.  At one point she looked at Peter seriously and said, "I can see that you're a mild-mannered fellow and you're going to have to learn how to complain."  Though I try to act like a grown-up at Duke, this was too much for me, and I burst out laughing.

The background for this next tale is that Peter and I spent two nights at a B&B in Black Mountain last week.  At home we share a king-sized bed, and sometimes that isn't big enough.  I have allergies, and will snuffle enough that Peter (politely) asks me to move to the guest room in the middle of the night.  Sharing a little "full size" bed in the mountains was a challenge (for Peter) so when I asked the NP if I would be able to sleep in Peter's hospital room he said (a bit too emphatically), "No!"  Then he explained that if he was to get his sleep in the hospital I'd better sleep elsewhere.  Well, there IS a recliner for me, and I intend to be there, insisting that everyone who enters washes their hands.  He'll be too drugged-up to wake (I hope).

The doctors told us that the greatest post-op threat will be pneumonia, and as such, they recommend a "no visitors" policy.  We will welcome friends later, when Peter is at home and past any danger that common viruses can pose.  The girls and I will try to keep you posted via this blog, but visits will have to wait. 

If you have experience with surgery and have any tips to offer, I welcome them.  Hospitals are foreign territory to me, and after this experience I hope to keep it that way.

I need to say thanks to Holli Crawford, who is single-handedly holding down barn and all 5 of the horses there.  She'll get help, no doubt, from Rose Wilson (whose Virgil lives here), and Gayle Dauverd, my trainer and curry chef (and from Holli's friend and expert mucker, Leon).  And speaking of single-handed...fellow barn bum Jen Stout broke her arm and is having a heck of a time getting healed.  She can finally drive, but managing a muck fork is still on a distant horizon.  If you need a horse to ride (and have some skill) let me know and I'll pass your number on to her.  And if you'd like to adopt acute  mustang yearling, give me a call.

I expect to find some real trepidation waiting for me once I let go of this focus on work.  Peter will be hospitalized for about 14 days.  You'll know from the way that hospitals work these days that is a really long time, and it reflects the seriousness of this surgery.  But his surgical team expresses such confidence, and have so much skill and experience among them.  It feels a little like we're boarding a Greyhound bus.  Folks from our generation will remember the slogan, "Leave the driving to us."  That is, it seems, exactly what we're doing.  In a couple of weeks we'll wake up and we'll "be there," --back home and on the mend.

OMG, we're in pre-op!

[BY SUSAN]
LONG wait, but GOOD NEWS in the end, and a lot of confidence in the team of surgeons.  They scheduled surgery for the 13th...way sooner than we expected...and Peter is waiting for pre-op now.  They do a number of tests that are good for 30 days.  We'll report a lot more later.  We don't have the "official" read from the scan by the radiologists, but we have Dr. D'Amico's read, and he says we're good to go.  There has been "no progression of the disease."  The kind and patient Scott Balderson (who goes to church where I work) went through everything in great detail and handled all of our questions.

It has been a very long day.  Our wonderful daughters Jessie and Amanda were with us.  Lots of gratitude all around.