NEW JERSEY DEBRIEF

    Grateful: My flight back to California this time--from Colleen's door to mine--took only 12 hours as compared to 24 hours in late May. Less Grateful: Only 2 of this trip's 10 Jersey Shore days had thermostat readings suitable for humans. Mais, que sera. Colleen and I made the best of our indoor incarceration: naps, Words With Friends, long stretches of reading, time spent with Mom & Camille & Leslie & visiting first cousins Mary & Sheila from the town of Olean in upstate New York where Mom & myself & Colleen & Camille were born, and drop-ins from friends. Most days near nightfall, Colleen and I took our spin around the neighborhood never without the charming accompaniment of cicadas and lightning bugs. After dark we watched great television, usually until quite late:  "The Killing" on Sunday nights; "Forbrydelsen" which we streamed online, the original Danish version of "The Killing"; "Endeavor" on PBS, the prequel British series to "Inspector Morse." We even traveled back into the past with the very first episode of "Inspector Morse" with actor John Thaw playing Endeavor Morse as a fully fledged adult and Oxford-educated police detective. None of this would have been possible without air-conditioning.

      At the outset of every visit to Colleen's over the past few years, she asks me what I want to do while I'm there. I never have an answer. However, this time I did--the New Jersey Pine Barrens--a mysterious, massive swath of South Jersey which has tugged at my curiosity and imagination for decades but which I had never laid eyes on. Colleen and Camille both started their families in the small rural community of Dorothy, but I didn't know until last week that Dorothy sits on an outer edge of the Barrens. I also didn't know until last week that my high school boyfriend lived on the edge of the Pine Barrens as well, further north. On no visit to his rural hometown of Pemberton did I hear a whisper about the Pine Barrens. I had heard of the Jersey Devil, yes, like every other New Jersey child and adult. But I had no clue that the legendary home of the Jersey Devil was so nearby, even to my family's own suburban town of Cinnaminson back then. I knew nothing about the Pine Barrens, real or imagined. And, actually, this ignorance persisted for quite a long time, even after I set out for California when I was 20.

                       Photo: The Jersey Devil


     The Pine Barrens didn't capture my attention until much, much later when I learned sometime in the eighties that my favorite nonfiction writer then, John McPhee, had written a short book, one of his first, on the Pine Barrens. John McPhee never writes on anything insignificant, about anything that doesn't fascinate. I bought a copy of the book for myself and my mother, who drives alone through the Pine Barrens regularly--even now at age 90--to see her longtime friend Dorothea. (She never leaves the paved road and always travels with a cell phone and only in daylight, she tells us. Nonetheless, we daughters don't exactly rest easy when she takes these solitary trips into the pines.)

      
      Before my trip east this time, I felt compelled to take the aging book off the shelf and start reading. I continued reading on the plane, and finished the book at Colleen's. In spite of its being a 45-year old firsthand account of the Pine Barrens, McPhee's short book was all I needed to whet my appetite to finally go there myself.

     "You know how you always ask what I want to do when I visit?" I said to Colleen on Day 1.

     "And you always say 'Nothing,' Colleen said, obviously expecting more of the same.

     "Well, this time I do." 

     Colleen's eyes opened wide. 

     "I want to go to the Pine Barrens," I said. "Do you want to go with me?" I asked her. "Do you think you could physically do it?"

     "Yes" and "Yes," she answered.

                                  to be continued

        

Back to Baltimore

Thankfully, appointments had to be changed so Mignon and I set out for a one day trip to see Dr. Mathai at 11 and Dr. Wigley at 1, this past Tuesday. I was really looking forward to talking with both of them about my condition and what lies ahead.  Dr. Mathai seemed surprised that I was doing as well as I am.  Now that I am not seeking any aggressive treatment and there is no cure, the goal now is comfort.  Might the progression slow down?  It might.  Positive thinking.  It didn't sound like we'd do any more tests, no point in that.  Dr. Mathai is an excellent doctor who tried everything he could to get me to Pittsburgh.  I could sense he agreed we couldn't pull a rabbit out of a hat.  His counsel and expertise was/is invaluable.

You know this guy has to be pretty special if I post a photo of myself looking like this!

Then, it was on to Dr. Wigley.  Once again, mapquest gave us the wrong directions but this time we were lost in the city not in the pines.  I hadn't seen Dr Wigley in months.  Another great doctor, a major player in the scleroderma world.

Unfortunately, we forgot to take a picture of us together.  But, here he is.  He's in a documentary that is now playing at the Ritz in Philly called "Project Scleroderma:  Beneath the Surface".  If you have the inclination, you can get Dr. Wigley's segment on YouTube.  Just type in name of film.

Anyway, he made some medication changes, thought I could try being on my own, having someone come in during the day, at least for now.  He's had so much experience, I trust his judgement.  He agrees to forgo the transplant was a good choice.  I'm still on pallative care and considering hospice but a lot more questions need clarifications.  Don't let the words shake you up, the bottom line, of course, like everything, is $$$$$$.  That's not to say I don't have more decisions to make.  Slow and steady.  Breathe.  Wigley and Mathai, along with my nurse, Theresa, have convinced me to go ahead now and take the xanax to help with breathing.  Maybe a bit of morphine might help.  Staying a head of symptoms getting out of control.  Again, as I tell myself, don't let the words shake you up.  These are changes that will add to maximizing the quality of my life.  It does seem scary though.  If I was 20, I'd probably be excited, getting permission to take some "downers".

Moi? Short Tempered?

The feeding tube has been out for a few weeks, no hospital visits for lasix IV and generally I feel better.  I still need help but I want to be independent.  "I can do it myself.  I just said that.  I know what I'm doing.  Give me some credit."  I can think of others statements I've blurted out.

Once known for my patience, I slowly began to realize I was being short with some of my family and friends.  I had a sister, gently confirm, that "yes indeedy, you have been snippy."


Once again, get back to the breath, in and out.  Somedays, it's so hard when you can't keep up.  Whether its conversation, going to the beach, visiting others, my frustration gets the best of me.  So, on the one hand, as I get a little stronger, I'm expecting everyone to just know that.  I see it now.
Next time, I'll try to pause first, take a breath and try not to be too bitchy.

Local Woman Has New Lungs

Last August, I was still driving to rehab.  There, I met Joanne.  She'd been on the Pittsburgh transplant list for two years and had scleroderma for eight.  Younger than I, she was walking that treadmill for 15 minutes and more.  I was impressed and encouraged.  I believe sometime in October, the rehab patients and staff wished her luck as she left for her three month check-up. She would be my barometer.  For months, no one heard a word except that the doctors had her stay at the hospital.  Meanwhile, my health was declining.  My heart straining and the water retention rising, i.e. heart failure.  I couldn't make it to rehab anymore.  The rest of my story you know.  I never stopped thinking about Joanne.  When I finally was able to speak to her husband, he just kept telling me to do what I needed to do to get on the list.  As you know, I went into battle.

Having not heard a word for months, the husband didn't return my phone call, I feared the worst and I made my decision to change strategies since the odds were so not in my favor.  When I saw Joanne's picture in the paper surrounded by her husband and two boys, I was just thrilled for her.  She did it!  She got through the horrific experience.  I must confess I felt envy.  I also had doubt, could I have survived the ordeal?  I closed my eyes, and sat with my breath, in and out.  I'm back to feeling at peace with my choices.  As for Joanne, she's a champion in my book.  I might never see her again, but I'll be rooting for her to live her best life with little complications.

That's Why They Call 'Em Ghost Towns

It's been while since I've posted so I have some stories.  This is the first.  Last Monday, in spite of the heat, my mother and three sisters set out to explore the Pine Barrens.  Mignon, having left for California at age 19, only remembered passing through this unique area on our way to the shore.  This was once a thriving region for iron and glass production.  Soldiers during the Revolutionary War, traveled the bustling road you see below.  Today, the production of cranberries is the money maker.  If you live in NJ  and have never had the opportunity to watch the harvest, you should make it a point to in the early fall.  There are trees, orchids, and animals unique to the area which has the largest, cleanest aquifer in the nation.  There are more ghost towns here than in the west and we set out to find "Friendship", one such town.  Armed with AAA Map and NJ Back Roads book, we went on our adventure.

It wasn't long before we were "strangers in a strange land".  Are we lost?  Five women with strong opinions!  You can imagine!

The farther you travel, the smaller and sandier the roads.  We're laughing but clearly the map doesn't seem right.  A truck is coming in the opposite direction.  Mom wants Leslie to ask directions.  "The Piney might have a gun", she exclaims.  We forge ahead.  No "Friendship".  The Green Heads (biting flies) are swarming the car.  What to do?  We plod along.  Finally, we come upon a monument and we know we are way to west.

In the middle of nowhere, a famous plane crash.  We're still laughing but when another pick-up is coming in the opposite direction we hail for him to stop.  "How far is it to a paved road?" Leslie inquires.  "I don't go by miles around here," he replies, "Just keep going, go over 2 bridges and an S-turn and you're not to far,"  and off he goes barely hearing our "thank you" and "have a nice day."  Okay, at least we know we will end up on black top somewhere.  When we finally reach it, we know where we are, renewed we decide to go find "Apple Hill", the largest elevation in the Pines.  In the end, we realized we did pass the town of Friendship.  No marker or artifacts remain.  This is what we thought we might find, but we all decided it was that hole in the ground we past a ways back.

Getting tired of reading this travelogue?  We were tired too and I, of course, had to go to the bathroom but didn't think tempting the green heads and ticks was worth the risk of going outside like a true pine girl.  One other destination before we headed to the living town, Chatsworth was to see "Apple Hill", the highest elevation in the Pines. (200 feet, gotta love it).  Once again, sand roads, we make the left as directed.  Some of us have had enough and are looking forward to a stop at the General Store in Chatsworth.  Leslie sees more folks outside their house,  she's going to turn around.

At the end of the road, "look it's the hill", someone points out.  Okay, that's it, laughter erupts, again.  We all agree no one would believe this one.  We do find the hill and get out of the car to face 100 degree plus heat.  I can't frickin' breathe and still have to go to the bathroom.  But, we did manage to capture the irony of this place.

Now, on to Chatsworth, stop at a bathroom, anticipating a cold drink and some window shopping.

Can you see the "Closed" sign?  Despite all the mishaps, we were still smiling.  We headed for home, the only comment made was Camille's husband, "And, you didn't tell anyone where you were going?"  That's what happens when you put 5 adventuresome women together in a van.

BACK IN SOUTHERN JERSEY
Today's heat index: 110-degrees. And so it has been here since I arrived on a red-eye flight two days ago. Southern New Jersey at its finest torture pitch. Col & I are hunkered down inside her sweet yellow house, only going outside at sundown for a wheelchair ride around the neighborhood's winding streets that are shaded by a heavy-leafed canopy of trees, mostly oaks. The high-summer sound of cicadas follows us everywhere. The sightings of lightning bugs flitting in the dark remind us of childhood when we'd capture them in glass jars where they would flicker for a while and then, Colleen remembers, their lights would go out. "We murdered them," she said. "Oh," I said back.

For those of you who live on the other side of the Delaware River...who may live in Jersey but not South Jersey...who may have stumbled over the "EHTHS" acronym in Col's latest blog...
Allow me to translate. EHTHS stands for Egg Harbor Township High School, where Colleen taught for thirty-two years. (Towns are sometimes referred to as townships in South Jersey; I have never learned why that's so. Egg Harbor is the name of a river that flows southeast from the Delaware, through miles of pine barrens, to where it pools into a major bay just before emptying out into the Atlantic. A long bridge, just rebuilt, crosses over the Egg Harbor bay to Ocean City, the barrier island where Camille and Leslie live and also our mother Suzanne. Colleen's lives on the mainland side of the bridge, a stone's throw away from the bay. I have never crossed that bridge without seeing snowy egrets poised in the tall green grasses of the bay's wetlands.)

Hmmmm...TMI?

Best Ice Cream This Side Of The Delaware

The Royale Crown opened in 1953 and has been serving homemade I cream and other delights for 60 years. It's owned and operated by the Graziano Family, which George joined when he married the lovely Reggie. If you haven't had a chance to enjoy this Hammonton landmark, the trip is well worth it.

I first met George when EHTHS opened in 1983. The Social Studies Department had some stellar teachers including George. Many of us have retired but George continues to read hundreds of essays and remains a master of his craft. He also serves the best blueberry ice cream through July then peach in August. We shared quite a lot as colleagues...good conversations, celebrations, and disappointments. I don't see George much now but that doesn't change friendship. I wanted to see George so off we went, Beth, Pat, 2 Oxygen tanks and me. You don't know what lies ahead so best you let your friends know how glad you are that they were/are still in your life. An adventure to another town..Wahoo! It was great. Of course, I fell right to sleep as soon as we got home. A good day!

4th Of July

What a great day for celebration.  I got behind the wheel of my car and took a bit of a ride around my neighborhood.  Wahoo!  A little shaky, next time I'll catch my breath longer before I take off for an adventure.  It felt good.  I'm not crazy enough (yet) to do this on my own.  Tina was with me.  She has her permit so she did a bit of driving herself.

To top off the celebration, Leslie drove me to Susan's for our annual gathering with good friends.  Another first, going out to someone's house.  Hot dog, potato salad, beans, and my first bit of wine since December.
PARTY.  I couldn't have asked for anything better.

I figure I'll worry about my sodium intake today.  Yesterday was a good day to celebrate independence!