Sunday, November 9th

I have so much to do at church this morning, I will be lucky if I get half of it done.

Steve has a fall clean up in Cranston at nine, so we catch the bus together on Hope St.  I get off on Thayer and he continues on to get a transfer to Park Ave.  By the time I reach church, it is eight o'clock.  This gives me time to get my classroom all set before my meeting with the Youth Task Force.  We talk so long, we miss the teacher appreciation breakfast which is also scheduled this morning.  It was our hope to present some ideas at the breakfast, but we weren't quite ready to do it until after it was over.

Sunday school class is small and sweet today, with seven children.  An election is held during children's chapel to decide which charity we will send money to after our annual slightly used toy sale on December sixteenth.  The teachers and children choose between The Make a Wish Foundation, an organization which helps feral cats, and a UU organization which is helping to ease the  ebola situation in Africa.   The vote goes to ebola.  I am surprised by the results, because in the past, the animal charities have been the recipients of our money.  I am so proud of our children and the choice they have made.

In class we talk about animal homes, where they live in the wild and where they live with humans.  We make pictures of barns and fill them with animals.

 After class, I receive such a nice gift.  It is a pair of mittens knit by my friend Dana.  She a very talented knitter, and has knit me a pair of the most beautiful mittens I have ever imagined owning.  They are so soft and warm, and knit with such love and care.

 Our class runs late, as it often does, so I don't make it to the Joyful Noise rehearsal that is happening after church.  This is a practice for the children and adults who will be singing together at the Thanksgiving service on November twenty third.  You need to attend two rehearsals to participate, so I will try again next Sunday.

When we are done with Sunday school, Sarah, my knitting pal and fellow Sunday school teacher and I decide to drop off the apple the kindergarten class used as peace trees back in June.  We had hoped to deliver them to the peace flag lady, Ginny Fox, back in September, but things kept happening, and we couldn't get it done.  Finally, we drop them off to her house today.

By the time I get home, it is nearly one.  Steve should be home soon, and we want to go visit our niece Julia at work.  She has been working at Napolitano's Brooklyn Pizza in Cranston for months now, and we still haven't been to see her.  We need to go early because we are supposed to go see A Christmas Carol at Trinity this evening, at five.

Our visit with Julia is short but sweet. 

The Back Wall of AS220

 We leave in enough tome to get our zipcar back to the lot near Whole Foods Market and walk to Trinity Rep.   We  make it there early, so we walk around and look at some of the murals that are painted in the area.  There are several good ones, but my favorite is the Shephard Fairey wall.

Shephard Fairey Wall

We head back to Trinity to find that we are a week early!  It is fine though, the weather is mild, and it gives us the opportunity to finish walking down Westminster Street, window shopping and finding a few more murals as we go.

When we get back home, we find two surprises on our doorstep. The first is a book in the door from Doug and Kathleen called The Fox Went Out on a Chilly Night, written by Peter Spier. The book is special not only because it is about a fox, but Doug met the author when he was young.  Peter Spier  illustrated two books that Doug's mother had written.

The second surprise is a pot of lentil soup left by Soli. Dinner, just when we need it. It has been a   magical day.      

Saturday, November 8

I attended a workshop on Social Media at First U today.  It was very informative.  I also realized that if I sit for a more than a few hours, my ostomy bag comes unstuck.  You would have thought by now I would have figured this out, but I guess it doesn't happen that often.  Chemo day would be the only day I sit for an extended period of time, but in that case I am in a semi reclining position for part of the day, so it is different. 

After the workshop, Steven and I had planned on walking over to the mall to see a movie, but I was feeling like things were not sticking very well.  I thought I might be able to change in the bathroom at church, which would have been a first, but then didn't have the adhesive pad I need to make the bag stick well.

Instead, we walked home, and by the time I got into the house, the bag was literally hanging off of me.

A Box of Warmth

My week off from chemo has seemed to reset my reaction time to the chemicals that are filtering out of me.  Non adherence of bags had slipped from the weekend after to the middle of the week following chemo.  Now it has slipped back to the weekend after again.  My tongue is not swollen, but I am much more sensitive to the cold.  My feet are tingly and sometimes feel like they are moving when they are not.  My fingertips are shiny and smooth, my fingerprints are not as prominent as they used to be.

When I arrive at home this afternoon, there is a surprise box in the mail from Target.  It is very heavy for its size, and I can't imagine what could be in it.  I open it to find it is full of Hothands handwarmers!  They have been sent by Ellie, who knows about cancer having had a run with it several years ago.  She knows firsthand how the cold can affect chemo hands.  This is such a huge box of thoughtfulness.  I know I will be offering up thanks to her often this winter.

Friday, November 7

A Neighborhood Gem!

Only three children today, so Sara watched them in the morning, and I watched them in the afternoon.
Lisa stopped by with some soup this morning, and it is just the kind of warm and yum a chilly day like today needs.

Steven and I go to so a Mary Paula Hunter with Jump! production this evening, called Frag-MentD.  Jump is a small dance company in Providence, directed by Mary Paula Hunter.  She is a free spirited, creative teacher who collaborates with the dancers she works with, young and old to create unique performances. She has a very devoted following of dancers, and I have seen the women in this particular performance grow and blossom as dancers in the eight years I have been following and supporting my daughter Ayla's passion for stage design and management.  She has directed the technical aspects of shows in Mary Paula's living room and in theaters throughout the city, and always does an amazing job.

If you have never been to a Mary Paula Hunter show, one where she tells stories and performs, you are missing out on some of the most interesting and sometimes bizarre performance art.
Mary Paula does these small productions about once a year. When they have been hosted in her house, she clears out her living and dining rooms and turns her house into a performance space.  One half of it is for seating, the other for storytelling and performance.  She delivers a monologue, while the girls in her troupe dance out parts of her story.  It often involves making a mess with food or water, which is always surprising.  The shows are always short, intimate and very entertaining.

She now has a studio in the basement of the Church of the Redeemer on Hope Street.  It is a medium sized space, complete with a stage, but Mary Paula likes to have the audience up close, so she uses the floor space instead of the stage.

Tonight when we enter, there are six dancers laying on the floor, beneath balls of ice the size of fists that are dripping on the dancers.  Each of the young women have a line they say, in sequence, which they repeat several times.  The lines are parts of conversations you might imagine have happened in this space.

The audience is seated in three pews that are on either side of the room, all facing the center.  There are barre stands in the middle of the performance space, with four stations at each corner, a bench, a waffle house, a practice space and a corner illuminated with rope lighting.  There are cardboard boxes on the stage, with geometrical patterns cut out, lit from within. 



Mary Paula roller blades around the girls in the center of the room when their conversation stops, counting each lap as she goes. 

In the practice corner, there is a lone dancer watching a video, which was taken in Mary Paula's empty house, from a past show.  While watching the dancers, she tries to follow along.


As the next scene begins with the six dancers on the center of the floor, Mary Paula lays on the floor near the lone dancer, who stops and dumps a bowl of water over Mary Paula's head.

The other dancers continue on, in a scene that seems to break down into a teenage spat, but is scripted.  Or was it?

We are asked to follow as the dancers exit through a doorway, and we find ourselves in a small room, just large enough for the twenty of us to fit in, leaving a small space for the dancers to move in the center.

From a corner of the room, a former member of the company launches into a monologue, a Mary Paula monologue, and captures her teacher's personality perfectly. She mimics the rise and fall of voice, tone and character with such perfect intonation and timing.  It is beautiful to see how this young woman has blossomed as a performer.

The dancers file out of the room, and we follow.  Seating is wherever you can plant yourself, Steve and I watch from the side of the room near the door to the small room.  The next piece is performed on the stage, where one of the pews has its back resting.   All those seated there must now turn around to watch this dance.  It ends with a hauntingly beautiful song sung by the dancers, and at this point I realize that until now,  there has been no music. It continues on this way, dancing unaccompanied by music, sometimes to rhythmic counting, sometimes to spoken phrases, often in the quiet of the feet of ballerinas dancing. 

Wednesday, November 5

Tonight I have a Prucom meeting, and it is my turn to bring dinner.  Steve usually makes dinner solo, but since I only have a few kids today, and they are all down for naps, I make some apple crisp and start the soups for tonight.  I roast some butternut squash for butternut squash soup, and start a chicken with some vegetables for a chicken stew.  I am not expected to bring more than one thing, but I am always worried about people not being able to eat something because they have special dietary needs, so I want to make sure there is something everyone can eat.  I am really looking forward to this dinner because the last time I made it for Prucom, in November of last year, my dad had just been admitted to the hospital, and I never got to enjoy it.  That night I made dinner, skipped my meeting and went to be with my dad.

Steven finishes up the soup for me while I finish my day with the kids.  We leave for church early, so I can reheat everything, and we end up arriving before the doors are open.  Fortunately, the night manager sees me while he is waiting for his shift to begin, and lets me in early.

I am also setting up an art project for the Prucom to work on, we are decorating a poster of our goals for the next few years.  My friend Jen has loaned me materials to decorate the poster with, and each of the Prucom members places a decorative stamp around the border.

Nori rounds out our meal with salad and cookies, and the soups are delicious and appreciated by all.  We work our way though our meeting.  It is a full one, there are always so many things going on that need to be discussed, but we end at a respectful time and head home.

Thursday

This week has passed both slowly and quickly at the same time.  On one hand I can't believe it is Thursday already, on the other hand, it's only Thursday?

Today it is raining, but not cold.  Since it is rainy, it must be a cookie day!  After we bake, we go for a rain walk to deliver our over abundance of goods.  We take an abbreviated chicken walk, a direction we don't often take our cookies in.  We drop them at the doors of all of our friends, the chicken house people and the woman who lives next door. There is the English woman who often greets us as we look at all the statues in her garden, and the owner of Charley the basset hound.  We add an extension to our walk and bring our last bag to the man in the kitchen store window who always waves to us.

This evening, Steven and I are planning to see a preview of A Christmas Carol.  One of his friends has given him tickets for helping them out.  It turns out that the show is not ready yet, and the preview is postponed until Sunday.

I could go to stained glass, but Kaileigh has already made other plans, and the thought of going out in the rain is not very appealing.  Instead I sit at the computer for too long, putting off working on my blog.  As the time goes by I wonder if it is because I know I have a difficult blog to post tonight,  A Visit to the Liver Surgeon.

I think so.

Monday, November 3

As I lay in bed, I am thinking about how my feet are feeling.  So far, they do not feel the same way my fingers do, they feel fat and slightly fizzy.   I think it is strange that my feet should feel this way when they don't even seem cold. I get up and take a hot shower to warm everything up, and get rid of those tingles.

Although the weather is forecast to be fairly warm, it is windy out as we get ready to take our walk.  It must look so strange when I go out for a walk with the children.  They are wearing hoodies, and I have on a hat, scarf, gloves and a winter coat.  I have on two layers of tops and leggings under my jeans.  When we first step outside in my sunny front yard,  I am afraid that I am over dressed.  As we walk down the street and I encounter the shade and the breeze, I am so glad for every bit of clothing that I have on.  When the wind blows I pull up my scarf so my nose doesn't go numb.  My hands are okay, but my feet are starting to feel tingly in the way that my fingers do. 

By the time we get  back to the house, my toes are not very happy.  I need to go inside early to start lunch, so I can let my toes warm up.  I definitely need a different strategy here.  I am wondering how I am going to make it through the next six weeks if things get cooler than this.  Six week, three more treatments.  The more I can do, the better this will go.  I am hoping for warmer weather.

Tuesday, Election Day

Since my last treatment, when I get out of bed, my whole world leans to the right.  It almost feels like an inner ear infection, except that it goes away after a few minutes.  Today, instead of jumping out of bed the way I usually do, I sit up to see what happens.  The room dips and sways even more while I am sitting still.  It seems better to get up quickly.

Steven and I need to go and vote, and want to get to the polling place early.  The polls open at seven, and it is a ten minute walk, so we dress quickly and get out the door.  I have on double socks, jeans, a tee, a long sleeved shirt, a sweater, gloves, coat, hat and scarf.  I contemplate long underwear, but think it is going to warm up, so I skip it.  When we step outside it is sunny and not too cool.

On our door, we notice a printed post it which says that we are reliable voters, hoping we will get out to vote today.  Since it is not quite seven, the note posters must have been out very early.  As we walk, we notice that some houses have these notes on them, and some do not.  Is this supposed to be an exercise in peer pressure?  Is this so we can judge our neighbors? This makes me feel a little uncomfortable, as I wonder what the point to these post it notes is.

Walking down Hope St. my face gets tingly, from the mild breeze, so I cover it.  My legs are tingly too.  I wish I had worn the long underwear.

There is a long line when we get to our polling place.  I am always amazed at how few people I recognize in the line, even though there are so many people.  Within a few minutes, someone from the front comes looking for people with last names A through C.  That is us, our ticket to the front of the line.  In a few minutes we have checked in and cast our votes.

This election makes me anxious, with so much at stake on a local and national level.  I hope that many people get out the vote.


 

Saturday, November 1

The day starts with toe tingles in bed.  I get up and put on my heaviest wool socks.  Today is forecast to be be rainy and chilly, but I want to get some work done on the yard before it gets cold and wet.  I dress in layers and get to work.  I manage to rake the leaves and get the zinnia garden pulled.  A couple of days ago I went through the garden and saved all of the last blooms.  They are in a big vase on my kitchen table, looking beautiful, but fading fast. I have saved a bunch of the seed heads in hopes of replanting the garden again next year.

I have a few minutes before Allie picks me up to go driving.  We visit Bagels Ole on Brook Street, the Providence Yarn Company and Job Lot before heading back to her house.  She and her mother drop me off at my house, and I have just over a half an hour to get ready for a visit from Steven's mother and Ed.  This is just the motivation I need to get some of the Halloween decorations put away and to get the downstairs straightened up.

They visit for about an hour, and we share some pleasant conversation.  Just after they leave, Alex and Filipa come home from the Providence Comicon.  They had won some tickets, but since the show was oversold, they weren't allowed in.  They were very disappointed.  Filipa was wearing her Princess Bubblegum costume in hopes of entering the costume contest.

Alex gives me a ride to the mall to meet Steve for a movie.  He has been at the comicon all day, at a booth for the RI Humanists.  We eat dinner in the food court, enjoying some of the best Indian food around.  We see The Book of Life, which is about the day of the dead.  It is a colorful, beautifully animated movie, with a good story.  There were a few young kids in the audience who were enjoying the movie with us, as well as some costumed folks from the comicon.  It was a very appropriate movie for this time of year.

Getting home from the movie proves to be a preview of what the winter could be like for me.  We hang out at the Omni Hotel and then walk through the convention center, killing time until we need to head for the bus stop.  We need to walk across Kennedy Plaza to Exchange St, where our bus stop has been moved to.  This means walking along the buildings that line Kennedy Plaza, which is now closed to pedestrian traffic.  The wind whips along the tall buildings, and starts to make my face tingle.  It also makes my eyes run, which bite my cheeks as the moisture rolls down them.  I have forgotten to bring a scarf, since it seemed so mild out when I left, and I end up walking with my face buried in Steven's back.  This is definitely going to be an interesting winter.

Sunday

It is windy and cool out today.  I had been considering taking the bus to church, but instead wake Alex for a ride instead.  It is warm and dry at church, and it feels good.

I am doing the announcements this morning in church, and it feels so different when I am on chemo.  No nervousness, no fear.  I just stand up there and do it, not concerned about my words, or making a mistake.  It could be that I am getting used to being up in front of the congregation after having done it a few times, but I don't think this is true.  I think the chemo alters a part of my brain that makes me worry about these things, and it makes me not care about how I appear or how I might mess things up.  I guess it relaxes me somehow.  I don't know that this is good, I feel like I am missing things I used to see easily.  I wonder if this is my new normal, or how long it will take to fade.

The All Soul's service today is beautiful. Everyone involved does an amazing job.  The music, the words, all carefully chosen and beautifully delivered.  I love this place.

I am fortunate to be offered a ride home by a few different people.  I go with Brett and her family, since they live so close to me.  On the ride home I find out that her girls had been hoping  that I would be a fox for Halloween.  They had been trying to guess what I would be and were sure this was the answer.  I find out some of the other children in my neighborhood had been thinking the same thing.  I am sad that I disappointed them, because of course that is what I should have been.

We drive home through the rain and snow.  Although it is humid and doesn't feel that cold when you are in in for a few minutes, I am very glad to have a ride home.

My visiting nurse comes at one fifteen to unhook me.  We talk about my side effects and my chemo.  She tells me that after twelve treatments you have to change from the Folfox.  That is all they will do.  After that it is too much for your body to tolerate.  No one ever put it that way to me before.

 

Halloween, continued..

After chemo, it is time to carve some jack o'lanterns.  There are still two boy at the house, and I ask if they would like to help.  Once they realize that I am not going to let them do the carving, they quickly lose interest.  I was hoping they would give me their ideas on what the pumpkins should look like, but this pales in comparison to the idea of holding a knife.  One child suggests that he could do it with a plastic knife.  When I tell him that a plastic knife isn't going to cut the pumpkin flesh, he gives up on the pumpkin idea.

I manage to get two done before my fingers get too tingly. With my fishing gloves on, I can empty out the pumpkin guts from the remaining pumpkins.  Ayla and Chauncey stop by and join in on the carving.  They are really enjoying themselves, and I am glad.  It is too hard to carve the pumpkins with gloves on.

We set the pumpkins on the steps and in the window boxes and find candles to light them up.  They make the approach to the house look so spooky!  Alex and Filipa come by with a few more pumpkins they carved earlier in the day.  The house is starting to look ready for trick or treaters.

Steve is busy trying to get our costume together.  Originally we were supposed to be two people in one costume, but because it is a little chilly and my fingers are very sensitive from the chemo today.  Instead he rigs up our mask so he can do it solo.  He puts it on a long pole and secures it to the front railing.  With the help of Ayla, they arrange the robe so that Steven can stand behind it unseen, and pass out the candy.  The fabric is made of a mesh that is dense enough that he can't be seen behind it in the existing light, but he can see well enough to see the kids coming up the steps. We take some photography lamps and make a spotlight, which casts an eerie shadow.

Alex and Filipa put on their costumes, Alex is Paul Bunyan, and Filipa is Princess Bubblegum from adventure time. They look so sweet!  I really love Alex's Babe, the big blue ox.  A blue helium balloon with an on oxen face taped to it, that bobs along behind him.

The trick or treaters start in a trickle around five thirty and are out in full force by six fifteen. There is a steady stream of Halloween traffic on my street until about eight, when it slows down again.  Many of my daycare children past and present stop by to say hello.  More have probably stopped by than I know, it was too cold for me to be out too long, so I stayed inside making appearances when Steve called me.

Alex and Filipa come home with a decent haul, describing to me how things looked in the neighborhood.  Most of the people passing out candy recognized Alex as Paul Buyan, Princess Bubblegum was popular with the trick or treating crowd.

All in all, it was a good night.  We had about five hundred goblins of all sizes come to our door, some fearless, some scared at first, but willing to be brave for candy.  There were even a few that decided it was not worth coming up the steps, and just walked on by.  Now to figure out how to store that mask until next year...