Awake!

[BY SUSAN]

The snow is accumulating outside and, without TV, I am left to wonder how much is landing everywhere else.  Our friend Betty Whitehead gave me some tips on air travel to the Philadelphia area, and I went ahead and booked Peter a refundable ticket for Friday on the hopes that he can make it.  See the previous post for the back-up plans.

I was worried at how much was sleeping (and not eating) but the rest seems to have done some good, as he got up for a while, ate, caught up on a few things, visited with Jessie, and finally went back to bed not TOO much earlier than he usually does.  It made me more hopeful.

I am enjoying all the outside work and getting strong by shoveling so much manure and lifting so much firewood.  We're cozy and I hope you are, too.  I got out all the cold-weather gear and double-blanketed some of the horses (with neck warmers!), and brought others in (the barn, not the house).  Dogs and cats are in the house, though. 

Tomorrow feels like a snow day, even though I won't be "off" of anything and will, in fact, have extra work because of the storm.  Still, it feels like I have permission to sit and knit a lot. 

Thanks for all your messages.  He actually started reading some of them today.  Email still best for now. 

Susan

Home Today

[BY SUSAN]

Peter came home from Duke Hospital late this afternoon.  I brought him home and went back in to Hillsborough to pick up his meds, and he was asleep when I got back and grumpy about waking up to take his pills.  He is sleeping again now.  I will never understand why hospitals don't let patients rest.  I hope he can catch up in the next few days.

I had pneumonia in 1985 when I was expecting Amanda.  Despite being pregnant, I was 30 and healthy, and the pneumonia laid me flat-out for a good number of days, and for a couple of weeks I'd be exhausted everyday by noon.  I don't think the pregnancy had much to do with it...it was the pneumonia.

As we ponder when/how to get to Philadelphia for Peter to start the Proton Beam treatment, our friend Scott in Newark, DE sent this:   

A winter storm warning is now in effect from Tuesday, January 21, 2014 at 10:00 am through Wednesday, January 22, 2014 at 6:00 am.  The National Weather Service is predicting snow accumulations from 5 – 9 inches beginning late Tuesday morning and continuing through much of Tuesday night.

On the way home from the hospital I explained to Peter the three options I saw for getting up there. That forecast probably nixes Option 1, which was to fly up on Wednesday (both of us) for his treatment to start on Thursday, and then Peter would go with his friends for the weekend and I'd head home.  Even without the storm I think that would be too soon.

Option 2 is for Peter to fly to Baltimore Friday or Saturday, get picked up by his friend Marty, and whisked off to wherever those guys are going for the weekend.  Then one of them would get him back to Philadelphia.

Option 3 is to fly in Sunday and start treatment Monday.  I'd probably go with him for a couple of days if he goes that route.  I discovered that flying to Baltimore is 1/4 to 1/2 the cost of flying straight to Philly, so I can rent a car and drive Peter over there.

The good news is that the docs in Philadelphia say that the pneumonia is not a problem for their treatment.  One of the nurses has kept in touch over the weekend, calling again tonight to see how Peter was feeling and saying that they were ready for him when he can make it up.

As you probably know, we have another cold wave coming in, with temperatures in the teens for several nights.  This makes farm work every more difficult, as well as keeping the house warm with wood.  Fortunately we have plenty, thanks to Peter's love of cutting and splitting the stuff.  In fact, it was his trying to cut and split last week, and being to weak to do so, that alerted him that something was amiss even before he ran a fever.

So while Peter is definitely "better," according to the doctors, I don't think he feels that way.  He was perkier yesterday morning, but not so much since then.  I am hopeful that being home and resting in his own bed will help, even if I do have to wake him up to give him medication.  I won't be poking and prodding every two hours like they do in the hospital.

Again, thank you to everyone.  It is better to email (greenriverband@aol.com or sglad1210@gmail.com) than to call right now.  Peter will be sleeping a lot, and I am pretty talked out.  Thanks so much!

Susan 

A Room With A View

[BY SUSAN]

OK, time to get a little fancy here with pictures.  This is last evening's view from Peter's room at Duke.  Looks like he'll have one more evening there, though he is MUCH BETTER today.  But since it took a bit for the antibiotics to kick in, the docs want to be sure the drugs are doing their thing before they release him.  He is in good hands, able to move about a bit (tethered to the IV) and he read his papers, ate, an napped already today.

Some of you have asked questions about the pneumonia and its relationship to the cancer.  There's a lot we don't know, but we feel like it is good news that last week's downturn in his overall well-being (which was pretty good) is due to something treatable...i.e. pneumonia. 

It is bacterial pneumonia, not viral, which means that he is not contagious.  When Peter had surgery in 2012 they re-routed his digestive system - a procedure called an esophagectomy with gastric pull-through.   You can look that up, but what it means is that he is more susceptible to aspiration issues than a person who has not had that surgery.  And aspiration can cause pneumonia.

Since diagnosis of the recurrence on 10/31 Peter has not had any symptoms (that we know) as a result of the small tumor they found.  And the latest scan, on 1/2, confirmed that there are no metastases. 
All good news.

I am scrambling in the background here to re-arrange his plans for travel to Philadelphia (see earlier posts) and will try to keep everyone up-to-date on what is happening.  For now I am grateful to see him much more like his old self this morning.  He was even hungry.

That's the news for now.

Susan

A sudden change of plans

[BY SUSAN]

Well, things sure can change quickly.  When I wrote on the 9th Peter was out cutting wood for next winter and today he is at Duke Hospital with pneumonia.  His strength and stamina had been flagging a bit, and when he mentioned "chills" last weekend I popped a thermometer in his mouth but, alas, his temperature was normal.  We both chalked it up to stress about the impending trip to Philadelphia and treatment, but I did keep after him with the thermometer.

On Monday he was at our family doctor's for a check-in, and no temperature then, and he felt a little better for a while.  I know I didn't check his temperature on Wednesday, but Thursday evening, when I came in, he looked so peaked that I checked it right away and when I saw 101.9 I hustled him into the car and to our clinic's after-hours doc.

They said his lungs sounded clear, and could offer no real reason to proffer antibiotics (so they didn't).  But they said they'd call Peter's physician, Dr. Art Axelbank.  He was off the premises but requested Peter come back the next day and ordered a CBC panel and chest x-ray.

And sure, enough, they found pneumonia, both on the xray and with Dr. Axelbank's stethoscope.  I was impressed with how he followed his hunch and got to the problem.  Peter got an injection and oral antibiotics, came home, slept, and woke up today with almost as much fever.  Dr. A told me to take him to the ER, and that he'd likely be admitted.

As you know, the plan was for Peter to travel by train to Philadelphia on Sunday the 19th of January, and he was to start Proton Beam Therapy for 4 weeks, with me joining him in a couple of weeks to provide care when the treatment started to take its toll.

We're in touch with the Philadelphia staff who say treatment can start once he feels like travel.  That's good, and we hope that these IV antibiotics will kick in and he'll be on the road (perhaps with me in tow) sooner rather than later.

But we don't know, of course.  We will let you know when we do.  I hope he comes home tomorrow, and comes home feeling really good.

Please no visitors for now.  Peter needs to rest, and I am absolutely fine and don't need anything except a good night's sleep.  I have help with the animals (thank you, Gayle) and plenty of food.

I'll post more when I can.  Thanks and love to all.   --Susan

Good-byes

This week I gave notice at work and today said good-bye to the 13-14 interns for at least a while.  I am grateful for Susannah Smith, who will cover a lot of my work in the short run, to Sarah Campbell and Ted Vaden for their support, and to the Johnson Intern Program and its wonderful alumni, leaders and friends, who have kept me so happily busy for almost 9 years.

More details will come. 

Susan

No News Was Good News, but then...Good News!

[BY SUSAN]
Just a brief update to say that Peter called the folks at Philly (pholks at Philly?) who said, among other things, that everything is good to go for treatment-- meaning that their PET/CT scan had not shown anything new or concerning.

In fact, though they said it is hard to compare measurements, the tumor that had doubled in size in 6 months (April to October) apparently has not grown at all (by what was recorded) in the past 2 months.  I assume that a large gain in size would have been noted....so maybe the diet did work!

Peter has a one-way train ticket up to Philadelphia on the 20th, and a host of cousins poised to help him in every way imaginable (thanks Lori, Joel, Janet, and John).  I'll stay here to manage things for a while and then join him around the 1st (driving up), and we'll both gleefully head for home on the 14th.

In the mean time Peter is getting his exercise by cutting wood for next winter and keeping the woodbox near the house full and ready-to-use.  We've gone through quite a bit in this cold spell, but the house has stayed toasty.

And I am running again...using a handy Couch-to-5k app on my phone to re-train my breathing and technique.  A chirpy voice named Constance says, "Let's go!" and, "You're halfway there!" and finally, "Good job!"

I am thankful to Susannah Smith for covering for me at work during this time (she has been a huge support throughout my career at JIP), and to Sarah Campbell and Ted Vaden, leaders of the Johnson Intern Program, for their support.  AND, thanks to the 2012-2013 interns who were in town over the holidays and made an instant party for us out at the farm! 

And to the many horsey/farm friends who've offered coverage for my time away.  Keep your phones by your sides!

Love to all,
Susan

[FROM SUSAN]
We made it home safely from Philadelphia despite being chased out by a storm named Hercules.  While Peter was being tatooed (just dots) and scanned, I tried to discover where the storm edge would turn from snow to rain and book a hotel room on the showery side.  We raced the storm south through snowy rush-hours in Baltimore and DC (where rush hour never seems to end).

Peter wanted to go the whole way home when he came out of his ordeal.  "We could be home by 10," he said, but I knew we'd be lucky to make Richmond by then, and as it was, we got to Fredricksburg a couple of hours later than even I thought we would.  I had imagined time to swing by a mall and buy cheap bathing suits for the indoor pool that I'd found at a Marriott.  Lesson #1, always pack a bathing suit.  They don't take up much space.

But we barely had the energy to drag our bags out of the car and into the hotel after driving bumper-to-bumper from Baltimore down.  Though Weatherbug announced it to be raining in Fredericksburg, it was snow we saw coming down in huge wet flakes.  Once Peter found an Irish Pub with live music, he was down with Fredricksburg and with the idea of stopping, eating, listening, and finally sleeping. 

I was happy to watch the flakes fall through the amber light of fancy street lamps still-adorned by Christmas regalia, and because I'd found (and paid for) a hotel with a 24 hour gym, I was bound to use it.  Despite a beer at the pub (and cabbage for dinner) I managed to get my Couch-to-5k run in on a treadmill with my mouth closed and breathing through my nose the entire time (Buteyko anti-asthma style).  That was about the only non-sitting time I had in the 50+ hours we were away.

We both slept well and a little too late on Friday.  Peter found a store called "Pickers’ Supply" on Caroline Street (I suspect we'll make it back there on a subsequent trip) and we made it home by 2 with time to return our rental car a day early.  But I almost negated the savings by putting too much gas in before we returned it.

The news from Philly is that, unless we hear differently next week, Peter will return to the city of brotherly love to start Proton Beam Therapy treatment on the 20th of January, completing a 4 week stint on February 14th.  They'd said anywhere from 5 to 7 weeks so 4 sounded just great and we practically ran out of the room before the scheduler could change her mind.

We have yet to calculate the details, but most likely Peter will stay with family (thank goodness for loving family and friends) the first two weeks when he is likely to be feeling fine, and then he and I will stay in a friend's friend's vacant apartment (another big thank-you) for the second two weeks when the radiation will start to take its toll on him.

Lesson #2 is to count your bags.  We got out of Joel and Lori's house with all of our stuff, but in the course of loading the car and handing the key off to the neighbor across the street, one of us left a bag behind...the green shopping bag that had my knitting, my books, my journal, and my running watch.  I didn't miss it until we were on the road hours later and I wanted to knit (while Peter drove of course).

It was garbage pickup day on Beaumont Street in Philadelphia, so right away I realized that all of these things in the left-behind-bag might have been tossed into the back of a big smelly truck.  I knew that it was going to take some real "letting go" to accept that all of these things were gone, especially the journal, which tracked back to before Jessie's wedding and holds numerous lists, including the thank-you-notes I have yet to write.

But I called Tony, the across-the-street neighbor, and he was on his way home and soon called back with the good news that the bag was sitting on the porch, and is now safely inside. You think you're holding it together going through a sickness, and then you do something like lose the bag, or leave your phone in the rental car when you return it (which I did late this afternoon), and the immediate tears let you know that, yes, this a tense and uncertain time.  Thankfully the rental car guy (Wayne) answered my phone when I called it, and we were just a 1/2 mile away.  All is well.

We came home to a delightful evening visit from the 2012-2013 alumni from the Johnson Intern Program, all of them except Kindred (we missed you!) back in town for a reunion.  Watty and Chris Bowes and Susannah Smith came, too, and we had a great time that was such a salve after a brief foray into the medical machine we are about to enter. 

One of the alumna told me how much she prays for us, and I was amazed at her insight when she said, "Sometimes I just feel so happy and joyful and I pray that you and Peter feel this way, too.  And sometimes I pray for the two of you as a couple, because I know that sickness can be difficult, and always I pray for healing."  I get teary again just typing all that wisdom.  Thank you.

We are grateful for the reprieve until the 20th.  We'll be filling our lives with as much fun and joy as we can until then.  More details will follow as we plan the month in Philadelphia.

Meanwhile, gratitude is a healing force when we consider all the support we have in this journey.  Thank you, thank you, thank you.