Peter, Sharon, and Solita

Whew.

First off to say that Peter is settling into his routine in Philadelphia and is doing quite well.  He seems to have recovered from the pneumonia, and is walking the mile (each way) to the hospital and back, so his noon appointments take up a good chunk of the middle of the day.  He is eating well and sleeping well, and actually appreciates the fleece-lined jeans I sent him for the colder days.  "They fit," he said, "and they keep me warm.  Who knew?"

Many thanks to Joel Steiker for his exquisite care and cooking this week.  

On other fronts my sister is in the hospital in Little Rock for cat-bite induced cellulitis.  The bite was from her own cat (long story), so no worries about rabies.  But the oral antibiotics weren't working, so she's getting the routine for cellulitis that Peter got last week for pneumonia.  Her husband, Gates, was admitted for a few days with bronchitis the week before that, which leaves me to wonder if I am next.  I am doing a lot of clearing out here at home, and climbing up to clean things and change light bulbs, so you can bet I am being VERY careful.

This morning I got word that my very dear friend, Solita Denard, was in a very bad weather-related car wreck yesterday and is in the Duke ICU with serious head injuries. 

Icy Auto Accident

I spent much of today tracking down information, and tonight got some very promising news.  I hope to meet up with her mother tomorrow and perhaps get to see Solita.  She and I worked together for many years, and everyone who knows her knows how special she is.  Lots of prayers and good vibes going up tonight for Solita


.

Peter hopes to get to New York next weekend (8th-9th) to see his mom, and most likely I'll go up that next week or weekend to be with him for his final run and drive him back home.  Tomorrow he will have completed 1/4 of his treatments.  That's amazing.

If you had come to the door of our house today I would have locked the door and hidden.  That's because I am clearing out cabinets, and all of the "stuff" is strewn out around the living room as I sort it out and (mostly) bag it for the trash or Thrift Shop.  It looks a little more orderly now, but that is just an illusion.  I hope, by the end of the weekend, to have a truckload hauled off.  It feels really good to do this.

That's about it from here.

Susan

Let the Snow Fall

First off, here's a link to the Proton Beam Therapy Center at the University of Pennsylvania.

UPenn Proton Beam Therapy

Second, here's the news from North Carolina:

 Winter Storm Warning for North Carolina

Snow I can handle. I've got my plan to stock up on things in the morning, and then hunker down for a lovely afternoon/evening and another "snow day" on Wednesday.  The frigid temperatures following the snow are what makes it hard to care for the animals, but it looks like they won't be around too long.  I've got my systems established, so will be fine.  Already got the woodbox full.  The dog walked right in front of the downhill wood cart again tonight.  It IS like a computer game (see earlier post).

I was a little worried when freezing rain was in the forecast, because as of now, "I don't do chain saws."  I have a couple of dandy little folding saws and I LOVE to clear brush with them.  But remembering the big ice storm of 2003 (I think); it took all day to clear the driveway -- with Peter on the chain saw and Amanda and me hauling logs, limbs, and brush (heavy with ice).  I think I'll check in with the neighbors to come up with a plan just-in-case.  And I guess it is time for me to put the blade on the tractor.

Peter had a long first day of treatment today, in part because he saw Dr. Metz, which he had not expected.  Cousin Janet stayed for the long haul, and got him there and back home.  Tomorrow he tackles the trip alone.  I took cousin Lori's map and translated it into the kind of directions Peter prefers..."walk out the front door to the sidewalk and turn left.  Walk to the corner (48th Street) and turn left again..."

Once he gets his routines established I think there will be a period of "ordinary" for both of us.  I am learning what it feels like to not be working off the farm, as I have done since 2005.  Peter is adjusting to city life, and this will be the second time we've ever been apart for this length of time, the other being when he volunteered in Mississippi following Hurricane Katrina.

With Peter away, here are my main companions - Shady and Piper: 

Remember, if you want to write to Peter, it is c/o Ginzberg/Steiker, 4813 Beaumont Avenue, Philadelphia, PA   19143.

On to Philadelphia

[BY SUSAN]
By the time you read this Peter will have had dinner with 10 family members including his beloved uncle and aunt, David and Shirley (parents of the Lori and Janet who are helping to take care of Peter).

David is Peter's mother's brother, and before I met him I had been so warned about his sense of humor that in the photo of our meeting--at our wedding in 1981-- my face registers a very clear "I have no idea what he might do" expression.  I don't recall that he did anything (probably took pity on a Southern girl) but over the years he has made me laugh harder than most anyone except Peter.

You can see the wonderful Shirley off to the right of the picture (she had no idea what he might do, either), and Peter's mother behind David.  That's cousin Nadine in the background-and I think Janet is behind me.

Peter has had a wonderful time with Marty and Scott and was very well cared for.  And though he did tire out some (to be expected after pneumonia) he ate and rested well and I think he'll be landing in Philadelphia ready to start treatment tomorrow.  Scott drove him over from his home in Newark, DE.

Here on the farm I am SO grateful for a slight break in the weather.  Yesterday's high winds were harder for me than the previous days' low temperatures.  I couldn't keep the house warm and working outside in the "Farmstead" building was a bit like working in a wind tunnel.  I did what I had to do and gave up on being very productive yesterday.

About 3 weeks ago I went to a "Mindful Yoga" class and wrote my column about it...so sure was I that this was one place I need to be ever week.  But circumstances prevented me from going back until today.  My dear friend Gayle Dauverd went with me, and though the room was packed, I really appreciated being led through the experience by teacher Amy Gorely.  It definitely made the day go well (along with Gayle's presence).

And then, icing on the cake, daughter Amanda came out and spent almost two hours helping me shovel manure (the verb is "muck) from the small paddock behind our horse barn.  Amanda does Cross-Fit and is as strong as an ox, and having ridden through her youth, she is an experienced "mucker."  It was fun to shovel alongside her and chat.

So many of you have offered help with things and we promise that we'll call you if we need something.  Right now I am enjoying the physicality of taking care of all the animals and bringing wood into the house.  There aren't many people I'd invite to shovel manure with me, but Holli Crawford, you're on that list!  And, Amanda, thank you.  Getting the paddock cleaned out feels really great.  It is odd what can start to matter in times like this.

Peter starts treatments tomorrow at noon.  Cousin Janet is going along for the first one.  It will take longer for him to get set up for the treatment than for them to actually do it...the entire procedure being less than 30 minutes a day.  I think that the noon schedule is perfect...allowing for a leisurely morning and then not too much day left to fill with exercise, exploration, and rest. 

Beyond that, almost everything is unknown.  Will keep you posted and I hope that Peter will start writing soon...bringing Philadelphia music history and song lyrics right to your computer screen.

Thanks everyone!
Susan

LOVESTEAD

"Lovestead" is the river house owned by Peter's college buddies Scott and Laurie Loveless.  He's there with Scott and their other college roommate - Marty Ellin.  Below are a couple of pictures from an earlier trip which included another friend, Jeff Johnson.














Peter just called and reports "feeling great" and "90%." 

And here is Marty's report via email just now: 

Susan- good morning. A quick report- to me, Peter is only about 100% better than this time yesterday. Pneumonia effects fading, surely- immune system kicking in and antibiotics gaining ground. And maybe also a slight emotional lift at being with old friends. But he is lively and playful and ate well and Scott and I are exchanging happy glances. 

Knew you would want know. M

Peter always said that laughter could cure him, and Marty and Scott can surely make him laugh.  They have serious talks, too.  Peter says this is an unusual friendship, and I'd agree.  They go so far back and have been through so much together.

Just wanted to share the good news.  I am getting caught up on some of my work with my little home business, Farmstead Health Supply.  The wind is finding all the cracks in our old house, but the big black stove is belching out the heat, and hauling the wood keeps me warm, too.  Peter and Geoff Hathaway had maxed out the storage space for wood in the house and porch, so I won't need to haul a load until later today.  I do enjoy it, though.

Take care!

Susan

Landed!

[FROM SUSAN]

Peter has landed at BWI and was picked up by his college buddy Marty Ellin to join two other old friends, Scott Loveless and Jeff Johnson at Scott and Laurie's river house in MD.  They should be there by now...so let the fun begin. 

Everyone in the family campaigned for Peter to have a wheelchair at the airport, but he would have none of that and, in fact, on Wednesday started doing a few chores around here.  I could see him getting stronger by the day - almost by the hour.

Yesterday he got some help from Geoff Hathaway to bring a big bunch of firewood to the house, but the rest he managed on his own and when I fussed he let me know that doing those things made him feel better.  Well, I can understand that.  I like to do things on my own, too.

A couple of you have asked about writing Peter, so here's the address:

Peter Kramer
c/o Ginzberg-Steiker

4813 Beaumont Ave.

Philadelphia, Pa. 19143

After dropping him at the airport this a.m. (he wouldn't let me come in with him, either)  I went to run a few errands in Hillsborough and had a series of small mis-haps that made me think I should lay really low today. 

They weren't much:  Two were cars that pulled in front of me or zipped behind too close for comfort.  At Weaver Street I set my ceramic mug down and proceeded to knock it off (and break it) when I opened the door to the breads.  Then I stopped on our driveway to take a picture of the tree stump that looks like angel wings, and I tripped on a vine on the way back to the car. Did the splat, but am fine.

On the good news side, all of my misplaced items have returned to me:  my ipod, the key to the PO box, and the items I cleared from the front hutch yesterday.  I've learned that I just have to wait patiently. 

I got the woodstove going again, did my computer routine, and am about to take a hot bath and just knit until time to don the woolies and go back outside for chores.

This morning, early, I felt quite toasty breaking the ice and throwing hay, then got chilled just going to the car for the airport run.  I realized that the difference was in having my Carhart overalls protecting my legs.  Somewhere I have a pair of jeans with flannel lining.  I am going to find mine and also order a pair for Peter...up north!  They're not something we need very often down here.

Thanks again, everyone.  Will keep you posted and at some point Peter will write too. 

SG

Better

[BY SUSAN]
You know these posts are from Susan because if Peter were writing them they'd be composed in song lyrics or be telling you the composition of some band and who wrote/sang what and when.  Well, this is Susan and I mostly tell you about Peter.

He is planning to head north on Friday.  Every day he is a little better than the day before, though still weak and sleeping a lot.  He is eating better, and today was supposed to take a little walk outside, "just to the end of the sidewalk," but he ended up driving the recycling up to the end of the road and then (what was he thinking?) bringing a load of wood on the cart from the woodshed to the house.

It was a bit much for him (but he did it).

When I do this chore it is pretty hazardous as the path to the porch is downhill with an upward sloping ramp at the end.  Almost without fail, just as I am running behind the cart with no hope of stopping it, aiming for that ramp, our old dog, Fleck, will decide to cross the path.

It feels like a video game,only trying to miss the target instead of hit it.  Between his efforts and mine we haven't collided yet, but he'd be the worse for it.  He is very deaf, so my yelling doesn't help.  Sheesh.

At any rate, the wood is in the house and being fed fast and furiously into the stove to maintain some warmth this bitter cold night.  All the cats and dogs are in, and the horses are either in the barn or double-blanketed.  Early tomorrow the ice-breaking fun begins.

Thanks, ya'll.  Will keep you posted.  Thanks for all the prayers and jingles and good thoughts and support.

SG

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.