Life in a Bubble

[BY SUSAN]

Peter's grandmother kept a diary and tended to write most often when she was angry or upset.   We seem to be keeping to that trend...not with anger, of course, but writing here when there is something going on medically, and laying low and quiet when things are, well, normal here on the home front.

Actually things have been better than normal.  From my perspective Peter has been in better overall health - energy and stamina and spirits - since well before his diagnosis in November 2011.

He returned from Philly to get his NC dose of the interminable winter and thankfully was here with his chain saw when the unpredicted ice storm brought down so many trees.  Jessie and Matt and their friends came out to help clear it all away, and fortunately little actual damage was done.

Since then Peter has re-stocked the sheds with firewood for next year - to replace the astonishing amount I burned during the cold month while he was in Philly.  He has moved back into his routines - volunteering, seeing friends, counseling a couple of clients each week, pouring over the paper every morning, exercising most every day, and lastly, watching old episodes of West Wing with me most every night.

He kept putting off making the appointment to go back to Philadelphia for a scan, and after a few weeks I quit asking.  We like this bubble and don't want to leave it.

But now the appointment is scheduled for Monday, May 5th and we'll see the doctor on Tuesday before heading back home.  We're hoping that feeling so good translates into good news from the scan.

To distract myself I decided to fly up a day early and attend the Maryland Sheep and Wool Festival, which is nearby, just outside of Baltimore.  The kids and I used to go every year, even bringing sheep to show at least once.  Amanda and I came together last year.  It is a huge festival with more than I can possibly take in in one day, but I'll enjoy every second of it...a mini vacation that feels right after the long winter.

After a brief hiatus I resumed writing my bi-weekly columns in the Herald-Sun.  Since leaving my job at the beginning of February, I've had a hard time "coming down" from the busy schedule I kept.  My last two columns have been about time and our perceptions of it.  Here's a link to one:
 http://www.heraldsun.com/chherald/chcolumnists/x2025293720/None-of-us-should-have-to-live-on-a-racetrack.  The one coming out this Sunday is about the Sky Mall catalog on our last flight.

Speaking of leaving my job, they threw a heckova going-away party for me.  It was a fundraiser as well, and I hope that it brought in lots of $ for the next class of interns.  Here are a few pictures.  It was a real highlight to have Solita there (middle photo).  I wrote about her accident in an earlier post.  The first photo is me reacting to an embarrassing story told by Ebeth Scott-Sinclair, and the last is all the alumni who could make it to the event.


That's about it here.  I just wanted to get something posted before flying out to the festival.  Peter will join me the next day.  Thanks to all.

Susan

[BY SUSAN]

My sister reminded me that we haven't written a blog in a while.  I'd started one post, which I'll include below, but my aspirations for posting it with pictures and the whole shebang exceeded the time I was ultimately willing to give it.  This is in part because Peter and I have taken to watching West Wing in the evenings, and that was usually when I'd eke out time to write a blog.

But to catch you up, Peter is doing VERY well, and here's a picture to prove it:

In my file I titled this "Wood Choppin' Man" as a joke, because we often hear people say, "choppin' wood," when the better terms are "cutting" (when you're taking the tree down) and "splitting," (turning fat logs into smaller pieces)  which what Peter has been doing a lot of lately since the two March ice storms we've endured.  He's cut, split, and stacked a whole year's worth of wood or better, which is good, because we've burned about two winter's worth of wood in this one season...it has been so darned long and cold!

Peter and I have not made the trek back to Philadelphia for a follow up scan.  I think we both want to leave well enough alone since things are so good, but I have a hunch someone from there will be calling before long.  I am hoping we can hold off until after Easter/Passover, since we're going to visit family then.

Well, so that I can get this posted, finally, I am just going to append what I had written earlier, slightly edited so you can tell that it is from today and not from two weeks ago.  Yeah, it is about the weather.  Is there anything else to talk about?
----------------------

EARLIER POST

During the big snow storm that happened while Peter was in Philadelphia I found myself composing a blog while doing the various and numerous chores that kept me busy.  On my mind was the fact that I was being particularly careful, knowing that I was here alone.

That fact came home to me one afternoon as I dragged a hose out to fill one of the deep water troughs.  I have to feed the hose through a wooden fence, hook it to the trough, and then walk around, through a gate to the other side to position it for the water to flow in.

That afternoon I must have been rushed or impatient because as I reached through the fence to hook the hose to the trough, I started experimenting with wriggling through.  Could I get far enough to avoid having to trot the short way around?

But I stopped when I realized the possibility of getting stuck and spending a long and possibly fatal night halfway through a fence with my head dangling over an empty water trough (and probably nibbled on by curious equines).  With that realization came the giggles, imagining such a scene, and I really did have trouble extracting myself because I think the laughter swelled my rib cage.

But dangers are real.  Our hound dog, Schley, has a bum leg and has to be confined to a longish line.  Every time I moved her or had to walk through her space (usually carrying wood) I was aware that she seemed eager to cut my feet out from me with that line.  One afternoon I startled one of the ponies with the wheelbarrow and her hooves flew - nowhere close to me, but they were another reminder of how quickly an accident could happen.  I tried to remember to keep my phone in my pocket, though it doesn't work that well out here.

Now that Peter is home we've had several other snow/ice events followed by tastes of spring, and then more cold winds blowing in with those near-fifty-degree one-day drops in temperature.  If I didn't have to handle another horse blanket this winter I would be thrilled, but I am not holding my breath.  Yesterday, on Facebook, I posted a picture of the snow shovel in its spot on the front porch.  I am afraid to move it for fear of tempting the snow gods to pour down on us once again.  Next week is April, so hopefully...

We lost power with the big ice storm, as did many of our NC friends, and it was off four full days.  Thankfully I had filled a barrel with water at the last minute (when you live in the country, no power means no water), and as soon as the lights fell I had pans all over the woodstove, one labeled "washing" and one labeled "cooking," plus various pots of soup and even baked potatoes (it can be done).  After the ice came the summer temperatures and it was too warm for the stove, but I kept it going low for water and cooking.

Every evening we drove 5 miles to our friends' Joe and Geri's palatial home for a luxury shower, and twice we went out to eat with them.  Coming to their fine house from our dark home with the pan-covered woodstove made me feel like the country cousins, or perhaps even the Clampetts, heading to town for their weekly (or monthly) shower.  We could have put a tub in front of the wood stove, old-timey style, but it was good to have a real shower and lights in town.

I am grateful that we can handle a lengthy power outage, but it sure was a happy evening when the power came back on.  As full disclosure, we DID get the generator running, but it can't handle much more than a few lights and the freezer.  I am going to look into a system (solar?) that can power the well and the water heater.  Oh yes.

Well, that's it for now.  Thanks to you all.

".....The Rainbow I've Been Praying For "

[BY PETER]

To paraphrase Barney Fife, I'm gratefully humble and humbly grateful for the treatment I received in Philadelphia. From the reception/intake staff to the radiation technologists, the nurses, the nurse practitioner, the registered dietition, and doctors, everyone was welcoming, thoughtful, and skilled. Aside from occasional dehydration, I've had no uncomfortable side-effects from the 20 radiation segments. 

I'm back to more regular exercise and look forward to weightlifting at the Triangle Sportsplex, where I was placed in the Boys' Modified Limited Junior Dare-To-Dream Division. This is a special group for adult men who can't lift anything greater that 50 ibs. on their best day.

Man in my group

Susan mentioned the rainbow we saw at the Trenton airport. The posting's title is a lyric from Johnny Nash's great 1973 recording of "I Can See Clearly Now", one of the first successful reggae recordings in the U.S.

The great Johnny Nash

I'd always wanted to be in a band that included this song in their playlist and with Red's Rhythm finally got the opportunity. On Saturday night we got to play this song and others at a benefit for a program based in Wake Forest called Mercy for America's Children (www.mac-cares.org). 

MAC was started by some friends of Stacey's who adopted two boys from foster care. Their mission is to educate and support the public on adoption issues so that children will have permanent homes. It was high on the best-ever gig list, as we played three hours without a break for an enthusiastic, energetic crown who loved to dance. 

Roger Jones, Frank Hunter, Wayne Watkins (drums), Stacey Curelop, Peter Kramer, Leon Patillo, and Jay Tun

On Saturday March 1, there are a bunch of cool events to attend. For readers who have never attended the Murphey School Radio Show, check out this great TV segment that was on WUNC-TV last week: http://video.unctv.org/video/2365182216/. I'll be a participant in the 3 PMshow but can't make the 7 PM production, as our band had committed early on to play at Durham's Blue Note Grill the same night. So if you can't make the Radio Show, Red's Rhythm would love to see you at the BNG starting at 8:30 PM. Finally, on Saturday morning, my civic club, the Schley Grange hosts a community breakfast, a fundraiser for our various programs--all the sausage, eggs, gravy, ham, etc., that you care to eat. Please call me if you have questions about any of these events.

Susan, Jessie/Matt, Amanda/Alejandro, and I continue to be overwhelmed by the kindness and thoughtfulness of friends and family.

Regards--PK

"And HOME sings me of sweet things..."

[BY SUSAN]

Those words are from a Karla Bonoff song.  You can hear Bonnie Raitt sing it here:

  HOME - Click the "listen while you read" link.     

(http://www.songlyrics.com/bonnie-raitt/home-lyrics/)

And home sings me of sweet things
My life there has its own wings
Fly over the mountains
Though I am standing still.

So we got home safely, though a little late, last night (2-21).  We flew out of Trenton, NJ, which is its own adventure.  At one point Peter looked at me and said, "Let's not use this airport again."  But we later discovered that if we'd used a major airport we'd likely not be waking up in our own bed this morning, as the spate of storms created cancellations everywhere.  Our pilot told us that we were lucky to get home, but we were still grumpy about the airport and didn't quite believe him then.

Ah!  There is so much to tell!  I didn't write my snow saga, and guess it will have to wait.  It seemed odd to come home to a place with no snow, as there was plenty left when I took off on Wednesday, and of course Philadelphia was covered.  Here are a couple of street scenes:

Peter is feeling very good, and, really, couldn't have done better with this course of radiation, especially considering how weak he was (from the pneumonia) at the outset.  They have given him a lot of IV fluids, and he will be battling dehydration for a while - partly an outcome of the treatment and partly from his post-surgery anatomy.  As I write this he is off at the gym already, and is playing a gig tonight with his Red's Rhythm band.

Here are some scenes we encounter as we walk to the Pearlman Center and the Roberts Proton Therapy floor inside.

After his treatment on Friday he got to ring the bell!  

BELL (or go to http://youtu.be/CXlxehxCUDg if the link doesn't work).

Peter's cousin Lori Ginzberg came for the ringing.  She and her partner, Joel Steiker, have been Peter's caretakers along with Lori's sister Janet and Janet's partner, John Caskey.

Lori is away Monday-Thursdays teaching at Penn State, and during two of the four weeks that Peter was in their home, Joel and Lori were also looking after Janet and John's kids, Simon and Hannah.  Of the 10 school days during that period, Philadelphia schools were closed for 5 of them due to snow, so Joel had his hands full.  Still, he made meals for everyone and managed to get a few pounds on Peter during his 4 weeks there.

Joel Steiker and Lori Ginzberg

  I think Joel and Lori might be happy to get their house back!

After Thursday's treatment Peter took me to some of the places he'd enjoyed, and these photos are from our walk to the Redding Market - an amazing food emporium that Lori and Joel visit with friends every Saturday.  En route Peter enjoyed the Hard Rock Cafe guitar sign.

 Oh, I wish Blogger would let me make a tile out of these pictures.  Perhaps one of my techie daughters will help me later.

Finally, after treatment and the bell-ringing we rested a while back at Joel and Lori's, packed up our stuff (not much!), and pointed the rental car towards Trenton.  Storms had been raging all over the east coast.  I got one of those warning calls from Greg Fishel about conditions back home, and even Philly was under a rare tornado watch.  It was still raining when we left, but the skies brightened as we neared Trenton and then, behold:

A rainbow appeared!

We took that as a good sign, even though we did later grumble over the conditions at the tiny, disorganized airport.  But we made it home, safe and sound, and boy did the dogs whine when Peter came in!

HOME.

"You'll Find This Dance Is Cool to Do/C'mon, Baby Gonna Teach It To You"

[BY PETER]

Anyone who has enjoyed or suffered my rants about 60's music knows that I relate strongly to song lyrics, factoids about the singer or songwriter, and other way-back information. In my perfect world, we'd all converse in early 60's song lyrics.

 

When I learned that I'd be spending a lot of time in Philadelphia, it was easy to recall my first associations with that city's music. The first records I bought and listened to around 1961 were on the Philly-based Cameo-Parkway label. Their artists were young performers and groups who specialized in dance songs: Chubby Checker (the Twist, the Fly, the Limbo), the Orlons (the Wahtusi), the Dovells (the Bristol Stomp, the Hully Gully), Bobby Rydell (the Cha Cha), and Dee Dee Sharp (the Mashed Potato, the Pony). I still have all the albums from 50+ years ago (!), including 6 Chubby Checker albums. The title of this posting is from Dee Dee Sharp's "Mashed Potato Time."

 

A couple of years ago Susan and I were eating lunch at Elmo's on 9th Street, I ordered my usual  meatloaf and mashed potatoes. The unsuspecting waitress asked innocently, "Would you like gravy with your mashed potatoes?" I answered excitedly, "Yes, because there was a record around 1962 called 'Give Me Gravy With My Mashed Potatoes.' The Gravy was a new dance and it was Dee Dee Sharp's follow-up to her earlier hit!" Susan started to roll her eyes and the poor server started to ease away from our table, likely wondering how much time she had left in her shift, whether she should call Security, or hang in there in the hopes of getting a big tip. She chose the last option, and every one was happy, I think.

 

In the 70's and 80's, I enjoyed other Philly groups like the O'Jays and Delphonics. But the authorities tell me that I've exceeded the limit on music trivia, so on to hospital matters.

 

I'm writing at the hospital, where I'm about to receive my 15th out of 20 radiation treatments. Any one who has been hospitalized for a while knows that there are occasional "indignities" that are part of the process. They may be absolutely necessary, e.g., getting constantly pricked for blood samples or IV hookups, but they feel intrusive after a while. I'm currently an outpatient, but the worst part of sessions is having to wear the gowns required for radiation. Before your name is called, you take off your clothes above the belt. Then you put on this long, cotton gown, with the open side to the back. Over that, you then put another gown with the open side in front. 

Because my Main Advisor for All Things In Life--Susan--isn't present to direct my arms, I struggle to find a way to tie loose ends. While walking back to the radiation room, I grab a handful of robe above and below the belt in a usually successful effort to prevent the whole mess from slipping off. My lurching past other patients bears a resemblance to a zombie in the movie "Night of the Living Dead." 

 

 

Don't forget the Murphey School Radio Show on Saturday, March 1 
(www.murpheyschoolradio.net) ! 

  A little (bald) boy, aged 4 or so, just rang the bell. Now he's posing for photos with his grandparents. Yay for him and his family and all the good folks who have treated him.

 

--Peter K

Waiting To Ring The Bell

[FROM PETER!]

This morning I walked through 8 inches of snow to get to the U. of Pennsylvania Hospital in Philadelphia, where I'm about to get my 14th out of 20 daily outpatient radiation sessions. If all goes according to plan, I'll head home, after the 20th, on Friday, 2/21. The docs say you can make up missed sessions, but that would delay a return to NC. I appreciated the staff who came to work under bad weather conditions so that patients like me could be seen.

When I started getting the treatments two weeks ago, I had to remove a necklace with a "charm" on it. The charm says "STAX" with the logo of a hand in the finger-snapping position. STAX was the Memphis record company and home of Booker T and the MG's, Isaac Hayes, Sam and Dave, Otis Redding, Johnny Taylor, the Staples Singers, Rufus and Carla Thomas, et. al. I attended the Durham Blues Festival about four years ago and was able to stand within 30 feet of Booker T and the MG's. Usually I'm not starstruck in the presence of famous people, but this time was different. Guitarist Steve Cropper was the co-writer of "Knock On Wood", "In The Midnight Hour", "Sitting On the Dock of the Bay", et. al., and the proximity to him was almost overwhelming. I look forward to putting the necklace back on for the indefinite future.

Another thing I look forward to is ringing the bell in the large waiting room of the radiology clinic. It's a custom here for a patient to ring the ship's bell loudly upon finishing the last scheduled session. Everyone applauds loudly, happy for and envious of the ringer. I've seen this done at UNC-Hospital, where a large gong is rung.

For people new to the blog....the reason I'm here is that my cancer was re-detected 4 months ago. Duke, where I'd been treated for the past two years, was unable to offer me much besides chemotherapy. Proton beam radiation, a specialized approach, is available at only ten sites or so around the country, and the hospital here is close to several family mermbers where I'm staying.

This space provides a good opportunity to publicly thank a lot of people. Susan continues to be there for me in all her roles: organizer of my medicine supply; reminder-er that I need to drink a lot of water; communicator with hospital persoonel; sender of warm clothes (I would never buy or wear fleece-lined pants on my own); keeper of our farm. Re: the latter, yesterday Susan, who is alone at the farm, put the blade on the tractor, fed 7 dogs and cats, tried in vain to to get Cledus the Mule out of the snow and into a shed, brought loads of firewood into the house, etc. Many friends are standing by to help, especially if there's a bad ice storm.

  Art Axelbank, M.D., my family doctor in Hillsborough, has been a superb diagnostician and caregiver. Two years ago he referred me to specialists who confirmed his suspicion of cancer and recently he made the right call about pneumonia. He demonstrates the  best qualities you'd want in a doctor--a smart, caring, kind doc. I'll mention other folks in subsequent messages.

Don't forget to attend the Murphey School Radio Show on Saturday, March 1. The seventh in a series of shows over the past three years,it's a comedy/musical/theatrical production in the format of a live radio show. Along with core cast members--singers Jennifer Evans and Stella, musicians Robert Griffith, Rick Keena, Lesley Land (and me), and various actors, the event will have initial appearances by a bunch of talented writers and musicians. 

Beneficiaries of the occasion are Meals On Wheels (Durham) and Farmers Foodshare. Go to www.murpheyschoolradio.net for ticket information. Every show, in the beautifully-restored auditorium has ended with a long standing ovation by the audience.

Love and clear blue skies to all----Peter K

So far so good

[BY SUSAN]

Peter's journey has been interesting because after two weeks of treatment (halfway there!) he feels better than he did when he started, and that's not the trajectory that radiation usually takes.  The reason, of course, is that he started treatment just on the heels of having been hospitalized with pneumonia.  So the pneumonia has resolved and the radiation sickness hasn't kicked in.  Here's hoping it just won't.

High on the list of what is helping Peter feel good is the exquisite care he is getting from cousins Lori and Joel.  Lori teaches M-Th at Penn State, so a lot of the weekly care has fallen to Joel who is such a good cook that I wonder if Peter will really want to come home.  Joel has anticipated many of Peter's needs, and has become a good friend as well as cousin-in-law.  Joel and Lori have done double-duty since they also looked after their niece and nephew in their home across-town while Lori's sister Janet and her husband John were away.  Peter has enjoyed getting to know Hannah and Simon better, and we anticipate a summer visit to the farm from Hannah, and maybe we can entice Simon, too.

I think all the walking is doing Peter some good as well.  Most days he walks at least one way (one mile) to the hospital for his noon-time treatment.  He talked of being tired and cold some days, but wouldn't take the trolley.  I knew why...he was afraid to navigate the logistics of getting a ticket, getting on, and getting off (hopefully at the right place).  Finally the weather drove him to ride the rails.  That night I got this message:


I took the trolley both ways today. Am writing from Des Moines--PK

See?  He can still make me laugh after all these years.

My home-organizing efforts have been modest at best, and most can't be seen from a walk-through.  You have to open drawers or cabinets.  But if you do, you might find something like this:



After the successful trolley-ride Peter bought himself a train ticket to visit his mom in NY this weekend, and I am gearing up to go to Philly in about a week.  I've tried to use this time to catch up on repairs and other things here, but the extreme cold that first week took a lot of time just to manage. So far this time has been a good transition from the working-outside-the-home life.

To follow up on the last post, my sister stayed in the hospital far longer than she or anyone else expected.  She got an infection from a cat bite to her wrist that went into the facia and threatened to get into the bone, which could be deadly.  She is home and infection-free now, but tired and weak.  Here's a picture Taz ("that cat").  Once, while visiting them, Taz tried to keep me from leaving my room at night when I needed to visit the loo.  Sweet ferocity.

 

My friend Solita is doing incredible well considering the severity of the wreck and her injuries.  She is awake, talking some, and by now should be out of the ICU and starting physical therapy.  She will have a long recovery, no doubt, but so many things went right for her.  She is fortunate to have wonderful family members in town and her mother is down from CT. 

That's about it for now.  I am bracing for more "wintery mix," but so far it doesn't look too bad.  The Hotwheels Handspinners are meeting here on Sunday for a fiber swap, so if you knit or crochet or spin, come join us!  Email me for details.  Thanks again to everyone who has checked in on us or helped out in one way or another.