Tuesday, January 20, 2015

Kathy is doing great. She's out of surgery and in recovery!

It was a long surgery, but Dr. Lentricia told me it went great. She's all back together and there was no sign of a tumor in her intestine. She's not in pain (she rates her pain at 2, which is a 4 for the rest of us.)

She woke up grumpy, but cute. She's already sitting up, but is on a restrictive diet of ice chips. 

I'm sure she'll appreciate some visitors.


Monday, January 19, 2015

Thursday, January 15

I go in for pre admission testing at Roger Williams Hospital today at twelve thirty.  Even though I had my ostomy operation here in June, I never had pretesting done. We were in a bit of a rush back then.

All of the people I deal with here are very nice.  Two of the nurses remember me from my June visit, but I admit to them I can't remember them.  One of them is named Maria, and I do remember that name, but not the face.

In the span of an hour, I am interviewed for admission, meet with someone from anesthesiology, get blood drawn, have an ekg, and get a chest x ray.  It all seems so quick and efficient. I am back home before two.

The anesthesiologist wants me to stop taking the echinacea I started yesterday.  She tells me they are not sure how it interacts with the drugs they will need to use to put me under.  I am still worried about getting a cold, but I will stop taking it anyway.

Friday

A new little boy comes to visit us at daycare.  He will start coming in a couple of weeks.  It will be nice to even out our girl heavy roster.

Kaileigh comes by to have dinner with us, salmon and salad.  Probably not the heaviest thing I could eat as my last solid meal before who knows when, but it is what I had planned for dinner before I knew the date of my operation.  After dinner go over to the Bucket Brewery in Pawtucket to see my friend, Jane Hesser, play her guitar and sing a few songs.  There are a bunch of families here from daycare, past and present, so it is a little reunion.  The kids have such a great time running down the hall, into the brewery and around again.  They are transfixed when Jane starts to sing, all lined up in front of her swaying to her music.  This only lasts a short time before they are off and running again. It is a great place to be tonight.

Josh is coming in on the train, so Kaileigh leaves me to pick him up and brings him back to the Bucket.

 It is a different atmosphere to enjoy music in with metal brewing tanks and kegs in the background, but it is fun.  The Noble Knots food truck is parked outside the door, and people keep walking in with yummy little bites of food.  Beer is available inside where it is warm, and filled with people.

Katherine Quinn plays after Jane finishes, but it is time for my crew to get going.  Dinner is waiting for Josh back at my house, and I think I should have a bowl of ice cream before I need to cease with the solid food. 

Saturday

This is my first day of a clear liquid diet.  I need to get my insides cleaned out to get ready for my operation on Monday.

Anna picks me up to go to the grocery store.  We haven't been shopping together in a few weeks, and it is nice to catch up. At the end of our trip I look at what I have purchased.  Not much in the way of clear broths or beverages.  Hopefully what I have will get me through the weekend.

Once Steve and I get the groceries put away, we get a zip car to run a few errands.  I want to make some pho soup base, and need some marrow bones.  I couldn't bring myself to get them at Stop and Shop, so we find some at Whole Foods.  We have some extra time on our car, so we stop into Blick Art Supplies to get some paper.  This will keep me busy during my recovery.

When I get home, I start the soup.  It needs to cook for six to eight hours, and I know I will be very hungry by then.  I try some coconut water, which is supposed to be good for you, but discover I don't like the way it tastes.  I think I can drink the can I have opened, but it doesn't take long to discover this is not going to work.  With each sip I like it less.  It looks like white cranberry juice is my drink of the day.

Ayla texts me that she and Chauncey would like to come over for dinner.  I think this is a great idea, until I taste the broth I have been making all day.  It is not very tasty.  It calls for fish sauce, which would improve it greatly, but Chauncey is allergic to fish sauce.  I tell Ayla the bad news about dinner when she arrives, and she orders from Pho Horns down the street.  I end up having a rich, flavorful broth for dinner.  She and Chauncey have pho with all of the fixings, and some appetizers too. Ayla has saved the day!

Sunday

Day two of clear broth diet.  I have left over pho broth for breakfast, with a glass of white cranberry juice.  This fills me up well enough to get through to lunch.

We start out in the big church today, remembering the teachings of Martin Luther King.  There is a story called Don't Sleep Through the Revolution, which has lots of visuals and youth involvement.  The kindergarteners are interested the whole time, until we need to leave.  As I walk with the children up to the classroom, Martha stops me and hands me a bag.  I am expecting it to be mittens for our tree, but it turns out to be hand warmers from Lucille.  I feel lucky and loved having so many people watching over me.

We get back to our classroom where snack is already on the table.  Being in the big church always seems to make some of the kids extra hungry, so we combine sharing time with snack time.

Marie and I talk about Martin Luther King Jr. and ask what the kids know about him.  They know quite a bit from school this week.  We make unity flowers, using our hands as petals.  By the time the flowers are done, there are colorful hand tracings from each of the children in class, along with the hand of our minister, James.  We try to come up with some dreams for the future of the world to put on the petals, but the kids are not really wanting to do this part of the project.  Instead we write the name of each person on their paper hand petals , and decorate them.  Sometimes you just need to go with the flow.

On my way out of church, I share the news of my operation with a few people, and get hugs and good wishes for tomorrow.  

When we get home, I fill up on more broth, the stuff I made yesterday.  I put fish sauce and a little soy sauce in it, and it tastes better, but not as good as the broth from Pho Horn's.  I try to eat enough so I will not feel hungry at the birthday party we are about to go to.

Kaileigh comes by to pick us up at one, but by the time I am all set to go, we are going to arrive a  late.  Things are in full swing when we walk in, and since we are at Brian and Renee's house, the food looks amazing.  The broth at least keeps me full for a while so I am not feeling hungry, but I know I am missing out on some great food.

I keep busy talking to people and don't miss the food too much.  There will be another birthday coming up in April, so I will look forward to eating their good food then.

We are the first people to leave, my feet and legs are starting to feel fizzy, and as I walk out to the car, I realize my head is a little woozy.  I definitely need more broth.

Sunday, January 18, 2015

Monday, January 12

Even though Dr. Safran told me to expect my chemo side effects to get worse for the next two months, it seems as if they are starting to subside.  Today my feet feel less puffy, my hands more flexible.  I haven't even dropped too many things today.  I am brushing my teeth as I am thinking this, and my gums start to bleed.  Maybe I am wrong.

I have noticed little aches and pains that have gone unnoticed while I was on chemo have started to make themselves known again. Those little twinges that remind you your body is getting older. Even my sloshy feet I can feel when I nod my head forward is lessening.  These are all good signs. 

Tuesday

Because the last few days have been so busy, I haven't been able to get to the grocery store.  We really need some fresh fruit, we ate the last of it yesterday. When Steve comes downstairs for breakfast, one of the kids asks him if he can go out and get some bananas.  Since there are only a couple of children before lunch time, I go shopping while Sara and Steve hold down the fort.

It is nice to go to the grocery store on a Tuesday morning.  There are so few customers, and the shelves are so well stocked.  I buy blueberries and strawberries and tell myself that this week, I will eat them.  I have been telling myself this for the last few weeks, but end up giving them to the kids.  Since I have been on chemo, I haven't been able to eat them.  They are too cold, or I am too afraid of eating them.  There are too many healthy foods to be suspicious of lately. I have little trouble with the sweet foods though.

When I get home, I make quesadillas for the kids, and a fruit salad with yogurt for myself.  It does taste good.

It was Lonnie's birthday on Sunday, so we are celebrating this evening at knitting.  Ayla has surprised everyone by baking a cake for her.  Such a sweet and delicious thing to do!

Wednesday

I have an appointment with Dr. Lentrichia today at nine.  I haven't heard from him since I found out my good news, so I am hoping we will be making an appointment to reconnect my colon soon.

Steve and I leave early in case there is rush hour traffic, and end up arriving before the office is even open.  When we are let in, we don't have to wait long before we are called to see the doctor.  I catch Dr. Lentrichia up on all that has been going on, and find out that he and Dr. Safran have been playing phone tag for the last two weeks.  He is happy about all that I have to tell him, and we make plans for my operation.

I am reeducated about the risks of the operation, he will try to do everything laparoscopically, but there is always a chance he might have to cut further in my abdomen.  He will need to see what my colon looks like where the growth once was, to see if how much scar tissue is there and if anything needs to be done to that, so he will have to scope me rectally. 

As we part, he tells me someone will call me within twenty four hours to schedule my operation.  This is just what I want to hear.

We stop at Whole Foods on the way home to pick up some echinacea and some bananas.  We have already gone through most of the bananas I bought yesterday, and I am afraid I will come down with a cold before my operation, so I want to combat it with echinacea.

Not long after I get home I get the call telling me they can operate on Monday, Martin Luther King Jr. Day.  This is perfect!  I even have Monday off already.  I will go in for pre-admission testing tomorrow at twelve thirty.

Saturday, January 17, 2015

Thursday, January 8

As promised by the weather forecasters, it is wickedly cold this morning, minus one with wind chills of minus twenty three. It looks sunny and bright out, but it is bitingly cold.

Providence has cancelled school for the day, which seems like a smart thing to do.  Julia needs to get to school in Cranston though,  so I go out to move Alex's car so she can leave for school.  I put the key in and the engine won't turn over.  I email AAA to come out and give us a jump, and then put the car in N and let it roll down the driveway far enough so Julia can get her car by.  In less than and hour AAA comes by and gets the car running.  We let it run in the driveway for a while to recharge.    Alex is going to pick Chauncey up from an appointment at Rhode Island Hospital later so we are hoping  the car will start.  When he gets back from that he calls to get a new battery installed.

It is much too cold to take the kids outside today, but a great day to warm the house up baking cookies!  At our usual walk time the temperature has risen only one degree, dangerously cold for little fingers, cheeks and toes.  Instead we play movement games inside and run around and around the house.

Towards the end of the day I am feeling so tired.  This is not particularly unusual, these days I am tired sometimes, and I have also been this tired in my precancer days.   How do I tell the difference between regular tired and tired from chemo, detox, cancer?

Kaileigh is getting out of work late tonight, so I skip stained glass.  I can't imagine the studio will be warm on a night like this.

Friday

It is not as cold today as it was yesterday.  A light blanket of snow has fallen over night and the world looks bright and clean. We manage a very slow walk around the block, but no one seems to be happy about it.  It is true the snow is rather disappointing.  It is dry and won't hold together for a snow ball, the only thing it seems to be good for is drawing in.  The appeal of this activity wanes before we round our second corner.  There isn't even enough of it for a ride on the sled. By the time we get back to my house, one of the boys has decided he would like to shovel.  The rest of us watch from the window as he and Sara push the snow off the sidewalk. It's snow tv!

My neighbor from two doors down stops by to say hello.  Although she lives so close, we seldom see each other.  She has been out shopping and saw some olive bread, thought of me and decided to check in on me.  It is such a nice and welcome surprise.  We have a nice chat while I am cuddling with one of my just waking nappers.

This evening my happiness friends and I meet at Sweet Indulgence in Pawtuxet Village to celebrate Nancy's birthday.  It is the cutest little bakery, all pink, white and brown decor, with beautiful cakes, cupcakes and candy.  I get a hot cocoa, and it takes me five minutes to find the cocoa under all of the home made whipped cream!  The cakes and cupcakes are amazing looking, but with the hot cocoa, they seem too sweet.  I am glad to be invited to sample from other people's plates, because I don't think I could manage much more.

It is fun to celebrate in such a charming little spot!

Saturday

Steve and I bundle up and walk down to North Main Street to catch the bus.  We are going to see a morning showing of Selma, The new Martin Luther King Jr movie about the historic march in Alabama.  We arrive at the mall just about eight thirty, and wait in the company of people of diverse ages and backgrounds.  There is a cluster of people who know Steve who have come to the show, aI run into a few people I know too.

Jim Vincent, the head of the NAACP in Rhode Island is supposed to be introducing the movie this morning, but because there are so many people here, and the theater has opened late, he has to wait until after the show to talk.

It is an excellent movie, well scripted, acted, directed and edited.  There are some places where the sound could have been better, it was at times difficult to hear what was going on. There are things in the movie that shock me, and many things that sadden me.

I did not grow up knowing about Selma, I don't even remember when I first heard about it.  I would have been only three when it happened.  As an adult I learned about it, and saw still photos of the event.  I don't ever recall seeing the historic footage that was used in the movie.  It was horrifying to see people being bludgeoned by other people, to hear them being spoken to with such disrespect. 

After the movie there was a question and answer period, with people speaking about their experiences in life.  There were a couple of people who grew up in Alabama who remembered the march, one man who even hitch hiked from here to participate. Our Congressman David Cicillini was there, and two representatives from the Providence police force were on hand to answer questions about current problems.

Some of the most amazing observations came from the youth that were present.

It was nearly one o'clock by the time we left the theater.  On our way out, I had to stop and change my bag for the first time ever in a public rest room.  All that sitting.  It wasn't the most difficult thing ever, but it was awkward.  I suppose if I knew I had to do this for the rest of my life, I would adjust, but knowing that it may soon be coming to an end seems to make things worse.

We get home around two, and I spend the rest of the day trying to get to the things I didn't do in the morning.

Sunday

This morning is a child dedication Sunday, so everyone starts out in the big church. This is a ceremony where parents, children and the congregation take a pledge to help raise the children being dedicated in a loving community.

When we get to our classroom, we make a poster for the mitten tree collection basket, and then bring the kindergarten class out to restock the tree.  There are still some hats and mittens on it from last week, but it is supposed to be cold this week, so we need to be sure there are plenty of items available.

Steve picks me up in a zipcar.  We are going to help Alex move back to Amherst today.  We pick up Ayla from her apartment on our way home, Kaileigh is going to meet us there.

Before making the trip, Alex and I check the fluids in his car, and run to Benny's to get some auto essentials he may need.  Once that is done, he leaves to get Filipa, and we start off for Amherst.  We will meet up there to see his new room.

He had been planning on taking classes at UMass this semester, but things have not worked out
financially. Instead, he is going to move up there to be with Filipa while she finishes up a couple of classes she needs.  He has applied to University of Rhode Island to take classes this fall.  On Tuesday Alex will interview at the Hadley Whole Foods, where they need a new produce person.  He is  confident he will get this job.

We arrive shortly before Alex and Filipa, so we go to Target to pick up a few things he might need.  By the time he catches up with us, everyone is hungry, so we stop off at Chili's for a bite to eat.

We drive to the room he is subletting until this summer. It is a nice sized room in the back of an old farmhouse.  There are grad students living on the second floor of the house, and other students on the first.   He doesn't know any of his room mates yet, and it appears that no one is home when we arrive.

When we first enter the room, we notice it is furnished with a full sized bed which is under a loft.  You can get to the loft by the rope ladder hanging down by the bed.  There is a desk in one corner and a chest of drawers kitty cornered in another.  At the end of the bed there is a coat rack and some plastic drawers which contain video game equipment.  The ceiling is high and pitched, with two sky lights.  It is cool in the room, but there is a baseboard heater near the bed.  It looks like a nice room.

As we start to unload Alex's things, we notice there are woodchips on the floor underneath one of the windows.  We realize that something has gnawed the panes off of a few of the windows, and that all of the blinds are askew.  There are bite marks in some of the slats in the blinds.  There is also a box of shredded tissue, and bits of foam on the bed and floor.  We figure out that an animal must have been in the room, but we don't know what kind or where it might have come in from.  We search the room, but can't find any animal.  There don't seem to be any droppings anywhere, and the room doesn't smell like urine.  I notice there is a piece of foil that is duct taped to cover a hole in the chimney. It is untapped on one side and looks like this may be where an animal could have entered.

By now it is seven, dark and cold. Alex tries to contact the landlord, but has no luck. We decide he  should come back to Providence and see if the landlord can repair the damage, find the animal and clean up the mess in the room.  As we repack the car, we notice a branch from a pine tree is close to the chimney that is on one of the walls of Alex's room.  We are confident now that there must have been or could still be a squirrel in the room somewhere.

We climb back into our cars and head back to Providence  Ayla goes with Alex and we drop Kaileigh off in Somerville on our way back home.





Thursday, January 15, 2015

Sunday, January 4

This is the first day of Sunday school in the new year.  We haven't been together in three weeks, and the kids seem happy to see each other after such a long break.  We talk about resolutions and thinking about the coming year.  I love little kid resolutions: be nice to my brother or sister, help out mom and/or dad, learn to skateboard.  They are so simple and attainable.  We should all learn from this.

There is a lot of cleanup that needs to be done at my house today.  There are still scraps around from yesterday, along with many of the art supplies.  I have to confess, I kind of love cleaning when the house is such a mess like this, because it gives me such a sense of accomplishment.  You can't help but see the results.   A closet?  Who can appreciate that, except for someone who frequently opens that door.  But a living room art trashing?  That is where you can really see a difference.

I get all of the art supplies put away, but still need to tackle the Christmas tree and assorted decorations.  With help from Steve, we get everything boxed, put away, the tree to the curb and needles swept, vacuumed and gone! By the time I need to pick Anna up from the train station, order is restored for the most part.  The few things I have left to do I can get in the morning.

Monday

It is good to see my daycare kids after our break.  Everyone has had a nice time off, and all are happy to be with me and Sara again.  Steve helps out in the morning so I can run to an appointment that I show up to three hours early.

 Doh!  I reschedule for tomorrow and go home.

Steve is out for the rest of the day to cover the mayoral inauguration. It is a busy day for him.

Tuesday



I make it to my appointment today at the right time.  I am still feeling badly about mix up yesterday.

Alex helps out so I can go.

I paint snowmen on black paper with the kids today.  I can't get the boys to come paint with us, they are having too much fun playing cars together.  They really missed each other during our break.

Because the boys don't want to paint, there is room for me at the table to sit down and join in.  I paint big round circles on the paper for the kids to fill in with white, giving them accent colors when they are done making the snow.  If I give all of the colors at one time, everything gets mixed until there is just one shade of grey.  Sometimes this works, but not when making snowmen.  When we are done, we sprinkle the paint with glitter to make it sparkle.

Julia comes home from school with a sore throat, and asks me to feel the glands in her neck.  My fingers are too numb to tell.  This is annoying.  Hot tea with honey and an early bedtime seem to be in order though.

Knitting is a fine, happy group tonight.  Ayla and Malani join us again, and Dana brings some brownies. Lonnie, Sarah, and Linda are there too.  I share the good news about my liver, and we drink tea and eat brownies to celebrate.

When we leave, the snow that has been gently falling all day sparkles in the streetlight, just like our snowmen pictures.





Wednesday

This is a day for music!  We sing, bang and parade our way through part of the morning.  One of our crew asks if we can take our long walk, so we go with it.  By the time we are through, everyone is tired, but nice and warm thanks to snowsuits.

I have a Prucom meeting tonight, which I have been secretly hoping might get cancelled due to the very cold temperatures predicted.  It doesn't, and I go.  I share my news at check in, and everybody applauds.  It was totally worth coming out just for that bit of love.

I feel bad towards the end of the meeting though.  Sitting for extended periods with a bag just doesn't work very well.  At least not where my stoma is located.  I have eaten something that has made me gassy, and  I can feel my bag working its way loose.  I don't smell good, and I feel badly for people sitting near me, but there is little I can do.

This whole bag thing is just driving me crazy lately.  I haven't had chemo in three weeks, and instead of things getting better, they have become less predictable and worse.  I need to apply a new bag at least two times a day, because of the slowly creeping poop.  the extra belly I have accumulated these last few weeks is probably not helping things either. 

The wind is bitter cold as I leave my meeting.  I hope that anyone who is homeless is finding a warm place to sleep tonight.




Wednesday, January 14, 2015

Saturday, January 3


My Dad's favorite Uncle, Carl passed away earlier in the week. Once again my sister Sara and I find ourselves at the Duffy Funeral in Cumberland. Carl was eighty, twelve years younger than my grandmother, his sister, who passed away last month.  It is the third funeral for this family in four months.  It is a somber morning.

This afternoon some friends are coming over to make vision boards for the New Year.  A vision board is an artistic representation of your goals and dreams for the coming year.  It is to be hung in a place where you will notice it often, to remind yourself of what you are working towards.

I had seen a blog post about vision boards and posted it on facebook to see if anyone was interested in making one.  A few people responded, so I need to get thing set up for our project.  Unfortunately, when my basement flooded, I threw out a pile of magazines.  Of course now I wish I hadn't.  I have asked people to bring some with them, hopefully everyone else has not been on a cleaning tear.

I have plenty of pretty papers, paints, colored markers, stickers, pencils and crayons.  I set them up on tables around the house, so people can help themselves to whatever they need.  I also have glue, poster board, scissors and tape.  The only thing I can't find is glitter.

By three o'clock, people start to arrive.  I am in the kitchen making soup, just in case we run into dinner time.  I have asked people to bring snacks along with their magazines, creativity takes a lot of nourishment!
There ends up being twelve of us and we don't all fit in the dining room.  Some people move into the living room to the daycare table.  I find a place on the floor using the couch as a table. It isn't long before my floors are covered with scraps of magazines.  People are busy planning and cutting.  Occasionally questions pop up like, "Who needs a crocodile?" or "Does someone want a dinosaur?"



 It takes a while for people to collect words and pictures to represent all they want to say.  There is a lot of thinking that has to go on to make things fit.  Some people prefer to go with simple straight forward designs, while others delight in filling their boards with pictures and color.  By six o'clock some people are done and ready to leave.  Others continue to work until much later.  I am not the last to finish close to nine.


I have included two pictures in my collage I painted earlier last year.  The technique I used is simple; paint lines and squiggles onto paper, and then try and find the picture.  As I explain it to one of my friends, she is curious to try it. Alex, Kaileigh and Steven join us. I find it very meditative and relaxing, and after creating a few, they all agree.  It is a soothing way to end a creative evening.












Tuesday, January 13, 2015

Friday, January 2




 I walk around on fat feet,
Shuffling, shuffling
fingers numb,
tongue tingling,
tipsy, tipsy,
as if on drugs, 
because I am.

Rapidly flowing
thorough my body, 
until slowly,
they leach out.
Healing, helping
bringing new health, 
slowly harming,
killing cells,
damaging nerves
numbing fingers and toes, 
mind and memory.

As I fight on
looking for the end, 
waiting, watching
wondering,
When will this all be over?

Steve and I bring an old imac and a tower to the apple store to be recycled.  They have been hanging around the house for years, waiting for this day.  I am so glad to see them go.

We drive to Johnston to the landfill to leave some old plastic ride on toys to be recycled.  It is a beautifully clear day, but as I stop my car to ask someone where to bring the toys a strong wind kicks up sand and blows it toward the driver side of the car.  The man I am talking to turns just as it reaches us and gets a face full of sand, before I can warn him it is coming.  I wonder how many times a day this must happen to him.

It feels good to be free of these things, and inspires me to move forward with my straightening task.  The more I clean, the messier things get.  It is a losing battle.


Monday, January 12, 2015

January 1 2015

Besides being New Year's day, this is also Steven's birthday.  Steven, Ayla, Julia and I are going to go to Boston today to visit the Museum of Science to celebrate.  We have some passes to get in, and are hoping to see Kaileigh working while we are there.

We look for the science discovery center, which is past the gift shop and down the stairs.  This is where Kaileigh is working, giving the children the opportunity to be scientists.  The nice thing about this lab is that it is free, if only you can find it.  It is set up for school aged children, but adults can stop in to see what is going on.

Today's lesson is on chemical reactions.  There are three children seated at a table before her, all wearing eye protection, and listening closely.  She asks them what they know about the subject, and  jumps right into an experiment.  She shows them baking soda and citric acid, and asks if they are familiar with these two substances.  "Do you know that gummy worms are coated with citric acid and sugar?" she asks.  I love the way she relates it to something they are familiar with.  They put baking soda and citric acid in test tubes, and look to see if there is anything happens.  Nothing yet, but once they add a few drops of water, it starts fizzing!  There is the chemical reaction they were looking for.  The kids put caps on the test tubes and watch as they pop off, flying high into the air.  They do it over as many times as they can, delighted each time the "rocket" flies off tube.

After she is done with that demonstration, there are aren't any more kids waiting, so Julia and Ayla pretend to be little kids and do the experiment with her. It is fun to do even if you aren't a kid!

Kaileigh needs to clean up and get things ready for the next crew of kids to come through the lab, so we go off to the gift shop to wait until she is done.  It is a science museum in miniature there!  We play until Kaileigh meets up with us.  She has only a short break, so we join her in the cafeteria so she can eat her lunch.  She shows us where her office is, but we don't go inside.  She has to get back to work, so we go off to explore the museum.  We try to take in as much as we can before Kaileigh finishes up with her shift.

One of the temporary exhibits,  The Photography of Modernist Cuisine , starts off with a hunger inducing photograph of a hamburger expanded up in layers.  It is followed by other appetizing photographs of food in layers, cutaways of food cooking inside of pots, grills and ovens, micro and macro shots of foods growing and in preparation.  My favorite part is the display is the cut away tools used in the photographs.  There is a stove that is cut so smoothly and precisely, I can only imagine the size of the tools they used to cut the metal so well. To see both the inside and outside of the stove at the same time is fascinating. 

We manage to see most of the free exhibits before Kaileigh is done, those that we missed we hope to come back and see another day, hopefully when Kaileigh can join us.  While deciding what we should eat for dinner, we are across from that huge photograph of the hamburger.  It looks even more delicious than it did a couple of hours ago.

  There is a place in Davis Square, near Kaileigh's apartment called The Boston Burger Company.  Josh has been wanting to try this place for a while, so he meets us there with Cass, a friend from college who lives in town.

The restaurant is small and crowded.  We need to wait for a table, but that is fine with me.  It is bitter cold out and my feet are feeling weird and swollen.  I don't want to go back outside right now.  Ayla, Julia and I wait on the table while everyone else heads over to the comic book store to pass the time. The wait was warm and well worth it.  When we get our burgers, they are amazing.  The fries are fresh cut and incredible too.  With seven people at our table, we manage to all get different burgers, even some turkey burgers and a veggie.  Everyone likes their burgers, and we were all in agreement over the house made potato chips that come with them.  They are so crunchy they make your head hurt!  They taste okay, but not as good as the fries, and they are so crunchy you can only eat a few.  Everyone leaves well fed and satisfied and we are ready to make our journey back to Providence.

Saturday, January 10, 2015

Monday, December 29

This is my vacation week, I don't have any little ones until next Monday.  I am going to spend my vacation trying to get some of the cleaning done that has been ignored for so long.  My friend Anna is leaving today for her vacation, and has left her car with me.  I am very happy about this, since I will be able to make runs to Savers and the recycling facility that I don't get to on weekends.

I have a ct scan at four today, and have to remember not to eat after two o'clock. My scan is at Miriam, which is very convenient.  Kaileigh, Steven and I walk over to the hospital where we learn I am the last scan of the day. This makes me think they squeezed me in.  There had been a paperwork mix up in the scheduling, and it took a couple of days to get things straightened out. 

This will be the scan which shows just how well my Folfox treatments have worked.

This ct room is quiet compared to the other I visited.  I don't ask, but I attribute this to newer, greener technology I have read about with the cooling system.  This makes the whole experience more relaxing. No loud whooshing sounds.

The drill here is the same as every other time.  There is a bed to climb on which slides into the large donut shaped ct machine.  I have forgotten to wear pants without metal, but rather than having to change into a johnny, I am covered with a blanket and asked to pull my pants down below my knees.
 I get an IV solution in my arm of contrast dye, the one that makes you feel like you might need to pee.  The bed slides into the circle of hard plastic up to my shoulders, and slides out.  I am instructed by a recorded voice to hold my breath and slowly it slides in again.  I notice two emoticon symbols above the bed.  One means inhale and hold, the other means breathe.  I don't remember seeing these on the other machine I used.  Just as my chest finishes going through the donut, I am instructed to breathe again.  We repeat this whole process again one more time, and then I am done.  It seems to go faster than the last two I have had.

In the evening Kaileigh, Steven and I go to see the movie Big Eyes.  It is a good movie, and it was fun to see the big eyed style of paintings, much like those that hung in my bedroom as a child.

Tuesday

Julia and I go to the registry to get her car registered.  We have a very frustrating experience.  We arrive just before it opens so we won't be there all day, and in the end we leave without accomplishing our task.  Most of the people we deal with are surly and unfriendly, surprising since we can only be the second or third person they have seen so far today.  The most helpful people we meet are a woman who was there on business, and a woman at the return ticket desk.  She was kind and clearly described what we need to do to get Julia's car registered.  We need a signature from her mom, so I arrange to meet with her later.

I return home to my cleaning projects. Just before dinner leave to meet with my sister in law at a bank to get her signature notarized on the car registration form.  I manage to do this, drop Steven at a meeting, and make it to knitting on time.  I don't end up having time to eat, but find some chips in the church kitchen to tide me over until I get home.  Ayla and her friend Malani are coming to learn to knit this evening.  It is fun to have new knitters join us. I have forgotten that Malani is left handed, but I figure out how to show her a knit stitch.

Wednesday

I return to the DMV with Julia and Steve.  We go in later in the morning, and our experience today is far nicer than it was yesterday.  I don't know if it is the holiday tonight, but everyone is very helpful.  We manage to register Julia's car with no further problems, renew Steven's license and get out of there in an hour and a half.  Surely this must be a record.

As we are driving home, Kaileigh calls.  She is already at our house waiting to go with me to see Dr. Safran.  By the time we get home, there is only a short time before I need to leave for Fain 3.  We walk over, I register, get my blood drawn, and my vitals taken.  Kaileigh, Steven and I are all shown to one of the exam rooms to wait for Dr. Safran.    While we are waiting, one of the teaching nurses comes in to visit with me.  She asks how I have been doing, and how my other doctor's visits have been.  She tells me Dr. Safran has good news to tell me about my ct scan.

Dr. Safran comes in accompanied by Megan, his resident, and and the nurse who had just visited me.  He asks me if I want to see my scan.  We go to his computer and and he shows me the scan from October, then the scan from Monday.  It is hard to believe this is the same liver.  There are no spots, no large tumor obstructing my vein.  Everything is gone, my liver looks clean.  It is like some kind of magic trick has been performed and my liver has been switched.

We go back to the exam room and Dr. Safran tells me we can plan on reattaching my colon now.  After that is done, at the end of February, we will meet again to see how my recovery is going.  If things look good, we will discuss starting another round of chemo, which will last about six more months.

I have done it.  I have made it through all of my folfox treatments and come out the other side with a clean liver, all by the end of the year.   This is by no means the end, but it is one wonderful way to end a year that has been difficult, and start the 2015 with renewed purpose and energy.  An upbeat beginning to a new chapter.

Friday, January 9, 2015

Friday, December 26

I am exhausted after yesterday.  This is nothing new, I usually am post Christmas, but I give myself permission to acknowledge it this year.  I am so glad I do not have to do chemo today.  I putter around all morning, cleaning up the Christmas aftermath, moving slow and resting often.

Kaileigh and Josh stop by before they leave for Boston.  They have spent the night at a friends house.  It is nice to hear about Josh's Christmas, since he was pretty tired when he came back from the Cape last night.  He was there for Christmas Eve, came back to be here for Christmas breakfast and went back to the Cape for the day.

Shortly after Josh and Kaileigh leave, Julie, David and his brother Peter stop by to say hello.  They have come east for the holiday, and have managed to squeeze in a visit.  Soon they will leave to meet up with David's other brother and his family along with Kaileigh, Josh, Ben and Helen to celebrate Christmas in  Concord.  From there the party will move on to the Christmas Revels in Cambridge.  They have an extra ticket, and have invited me to go.  I am thrilled at the invitation,  but I think it best to rest rather than do too much.  We have a short, sweet visit, catching up on as much as we can.  Time passes too quickly before they have to leave.  I am not sure when they will be back this way again.

Saturday

Steve does laundry, I get my haircut.  This seems to be our routine every six weeks or so.  After the haircut I have time to run to the mall to exchange a gift I bought that was too small.  I park in front of the Statehouse, in the spot closest to the mall.  I intend to run in quickly, but as I start walking, I realize my feet are feeling weird.  They have seemed odd going short distances lately, but now I find that they feel really strange in a hurried, longer stride.  It is as if my feet are padded with fluid.  They don't look swollen, and my shoes still fit, but they definitely are not normal.  I know this is a side effect of the chemo, but it surprises me.  Why all of a sudden now, I wonder.  I do the best I can to hurry, since I didn't add any time to the fifteen minutes that was already on the parking meter. It seems that rushing is currently not an option.

There is a birthday celebration for the little boy who lives next door to me.  It is his first birthday, and there are going to be crepes.  This sounds very interesting and  I am excited when I see the crepe truck in the driveway!   I go, but I don't end up eating,  I am not hungry.  I enjoy meeting family and friends of my neighbors and watching how they interact with one another.  They have such loving family and friends.  It is a joyful celebration to be a part of.

I make mitten and glove cookies this evening for the opening of the mitten tree at church tomorrow.  By the time I finish baking, it is late.  I will get up and decorate them in the morning.          

Sunday  Ayla's Birthday!



I do get up early to frost the mitten cookies.  Usually Kaileigh is here on school break to help me with this task, so this is the first year I am doing it on my own. It is not a difficult thing to do, it is just more fun to do it with Kaileigh.

I am the announcer at church this morning.  I think that I am going to be fine, as I have done this a few times in the past months, but I experience a momentary panic as I stand behind the lectern at the front of the church.  I recover, but realize that somehow being on chemo really did make me less nervous.  This side effect is not one that is taking long to fade.

Steve has come to church with me today, and when I am done with the opening of the service, I enjoy being able to sit beside him.  Today is our annual question and answer session with James.  At this service, he opens himself up to being asked about anything people might come up with.  Questions range from Unitarian Universalist spirituality to how we/he will cope when he retires later this year.  There is a large stack of question inscribed index cards that have been gathered during the morning collection, and he does his best to get through as many as he can.  He has expressed his nervousness about this service, but he does his job well.  He knows his stuff.

Shortly after the service is the opening of the mitten tree.  This is a tree that is in the front corner of the church near the street, that we hang hat. mittens, gloves, scarves and socks on.  Occasionally we will hang other warm items on the tree as well.

This idea for this tree was inspired by a children's book I had read several years ago.  It is a story of an woman who knits mittens for neighborhood children who don't have any.  There was a challenge by a former interim minister to sew seeds of goodness throughout our community.  If you had an idea, you simply raised your hand and were given an envelope.  There was either a note in the envelope wishing you luck in your endeavor, or a note and a check for one hundred dollars.  I had told Ayla about my idea for the mitten tree, and she thought it was a good one.  She raised her hand and received an envelope with a check in it.  With that I purchased yarn and knitting needles to start our mitten tree, and enlisted the help of our knitting group and anyone else willing to help.  Over the years, hundreds of warmings have hung on our tree, either knit by members of our congregation or friends, purchased new or gently used items no longer needed.  We have helped members of our community food share food pantry to keep warm, recent immigrants, homeless, nearby college students, and others we will never hear about.

In the beginning years of the mitten tree I had visions of trees throughout the city.  I inquired at other churches and libraries if people would be interested in creating more. I was never able to create any interest other than for our own UU tree.  This is okay though, it is enough for me.  And just as the seed of an idea grew to be a reality here, someone may be inspired somewhere else as well.  

Thursday, January 8, 2015

Christmas Day

I didn't go to bed as late as I usually do on Christmas Eve, so I expect that I will be get up early, like four o'clock early.  I sleep until six.  In a different year, this would cause me a lot of panic.  I would be running around like crazy trying to get things done.  This year, I take it in stride.  I get up and start prioritizing.  I take things down stairs with me as I go, figuring that the most important thing is to check on Christmas stockings.  I have always done this first thing, just in case any helpers wake up early.  It is important to be sure that Santa has arrived to fill the stockings, just in case I am up too early.  I have never beaten Santa to the task yet.

This year the stockings are a little lean, there are the usual socks and underwear, some poprocks candy, a toothbrush and a piece of small jewelery for the girls, a small toy for Alex.  It is helpful that the clothing takes up so much room, the stockings are overflowing.  They look good anyway.

Steve hears me moving around and comes down to start cooking breakfast meats and chopping veggies.  I rearrange the kitchen with a toast station, and set up a beverage table in the living room.  We are hoping to have many people over for breakfast this morning.  This is a Christmas tradition we started when we moved into our house sixteen years ago.  We wanted to give something to our friends for Christmas, and decided to give them a place to come where we could feed them and show them how much we appreciate and love them.  It gives friends who travel a place to get a good place to begin, and for those with no place to go, a warm, lovely start to their day.

For us, it is a morning of hustle and bustle.  My children have enjoyed helping out to the extent that they don't even mind not opening stockings first thing in the morning.  In the beginning when they were younger we tried to get to them first, but after a while, it became more about the breakfast we were giving our friends than the gifts they were getting.

Everyone in the family has a job that has evolved into their own special contribution.  Kaileigh is the toast maker, Ayla makes the menu and takes orders.  For years her friend Hannah has helped take orders, but last year she moved to Amsterdam.  This year our niece Julia filled in for her.  Steve makes omelettes, Alex keeps an eye on the beverage table, and I keep up with the dishes, baked french toast, and anything else.  In between, we try to socialize with our guests, which depending on the time of morning can be a little or a lot.

Kaileigh and Josh are the first of my children to arrive.  Josh helps slice bagels, and we put self serve items on the table.  There are simple ice breaker games for people to play, although most of our friends are familiar with one another by now.  Kaileigh makes a fruit salad.  Ayla, Chauncey and Powder arrive next, Ayla hurries to dash off menus.  For some reason, we always leave this job for last, but Ayla always makes impressive hand written menus on the fly.  Alex is ready to help too jumping in where ever he is needed, directing the flow of the kitchen, drying dishes, anything.  We've got everything set up just as the first guests arrive at nine.

I am a little nervous only a few people will show, since neither Steve or I remembered to remind people in advance.  We always let our friends know they are invited whether or not we mention it, so we hope people will come by.  Just to be sure I send out a quick face book notice, which could mean we get even more people than ever.  I didn't do a specific invite, I invite the public.  In the end, we see about forty friends. 
Powder sporting her new sweater.

People are  encouraged to draw on the tablecloth.
This year, I shirked my duties in the kitchen and did more socializing than anything else.  Sometimes I feel overwhelmed by the number of people in my house and find the kitchen a safe retreat, but this year, perhaps thanks to the chemo, I flit around happily chatting with friends and enjoying the good cheer.

Our last guests arrive around twelve, as we start to wrap things up.  It has been a busy, fun morning and we have seen many of our friends.  I think about friends who have moved away, are traveling or live too far away to join us. There are those who are no longer with us, like my mom and dad.  They are all loved and missed.

My sisters arrive with my nephew Brian just as we are getting the kitchen cleaned up. They bring in gifts and put them under the tree.  I start to make some broth for our dinner later today.  For the past few years we have tried to come up with ethnic themed dinners, this year we mix things up and go with food that needs to be dipped.  We will have a hot pot for the main course, with vegetables, pasta and meat that is dipped into a common hot pot of vegetable broth to cook, and fruit with chocolate fondu for dessert.  I throw a variety of vegetables and herbs into a large pot of broth and let it simmer while we open gifts.

Steve, my children, me, my sisters, Brian, Julia and Dan all gather in the living room,  each person usually choosing the same spot they may have occupied on this day for years. Our exchange is slow and deliberate; I hand out gifts, one at a time, and we watch and appreciate each gift that is opened before the next one is passed out.  It takes a while to unwrap things, sometimes it can be hours.  I don't know if we do things this way just because this was how my grandfather handled gift giving when we were children, but it seems like a much nicer way to go than to have everyone unwrap all their gifts at the same time.  There is time to pause and see how people like receiving what you have carefully chosen for them, rather than missing out because so much is going on.  It is peaceful and less chaotic.

It is fun to have my nephew Brian with us this year, he is four and so excited.  He becomes a great gift elf, delivering things to people across the room for me.  This keeps him busy until it is his turn to receive a gift, each item met with excitement and a gleeful smile. 

When our gift exchange is done, we try to get a feel for what people need to do for the rest of the rapidly disappearing afternoon.  We decide six is a good time for dinner.  Steve, Kaileigh and I start to work on chopping and prepping for dinner until everyone returns.

Even though dinner is approached with skepticism from some, it is a success.  There is some kind of food that everyone likes, and at the end of the meal, no one is hungry.

While some members of my family tune in to watch Dr. Who, the rest of us gather to play a new game, called Hit or Miss.  It is list making game, where you need to match as many or as few people as possible, depending on the roll of a die.  It is a fun way to end a very busy day.






Monday, January 5, 2015

Monday, December 22

Some children are away from daycare this week, others are visiting with us since they are done with school until the new year.  It turns out to be a nice little group with a mix of older friends and younger ones.  We make muddy buddies to put in the bowls we made for our parents.  It will be a nice treat for them to munch on during these last days of Hanukkah or on Christmas.

Tuesday

Today is big kids day.  Some of the younger children have brought their older siblings to daycare with them, and with the addition of some other visitors, the big kids outnumber the little ones.

It is the last day of Hanukkah, and we haven't even made latkes yet.  I just don't have the ambition to do this today.  They are so delicious, and make the house smell good, but most of the kids won't eat them, go figure.  What is not to like about potato pancakes?  Sara, Steven and I enjoy them, but we don't really need them, so I skip this activity this year.  I feel slightly guilty, but get over it when I realize the kids don't care.


We make candy houses instead, which is always a treat.  I take graham crackers, cut them into squares and glue them together with sugar.  The kids then cram as much candy onto their houses as they can hold.  This year, they are more interested in eating the chex and kix cereal than the candy.  What a remarkable bunch of kids!

In the evening it is just me and Linda at knitting.  It is such a busy time of year for everyone, we knew there wouldn't be many people around.  It is nice to have this one time and place that is calm in these days before the holiday.  Linda has brought cookies once again, and we enjoy them as we knit.

Wednesday

This is the last day of daycare before our holiday break.  We are open most of the year, Monday through Friday, closing on most of the federal holidays.  Sara and I take the week between Christmas and New Years Day off every year.  Since the year starts on Thursday, we are taking Friday off as well. It gives us the chance to rest and recuperate from the holidays.  When my children were younger, it also gave me some time to spend with then on their break. It is a time I look forward to every year.

There are only a few kids today, so I send Sara home after stories.  My nephew Brian, and sisters Jill and Sara are free to start their Christmas eve celebration early.  The few children I have are here until four, which even gives me a head start on Christmas eve.  Once they are picked up, I call let my kids know that I am free, and we meet up with some friends at the Gourmet House for a Christmas eve dinner.  After that we to go see the movie Annie.

This is not the way we traditionally spend this evening.  Our family usually meets with Steven's brothers families' at their mom's house, but this year things didn't work out.  We decided that our immediate family would instead spend the night together having Chinese food and taking in a movie.  Alex is spending the evening with Filipa and her family, and Josh and Chauncey are off visiting theirs.  Julia comes with us, and with our friends, we are a long happy table.  We talk and joke and draw on the paper table cover.  We converse as well as we can, share our fortunes and have a happy time.  We part with hugs for all, although we know we will be together again for breakfast in the morning. They have decided to forgo the movie, since there are still preparations to be done for tomorrow.  We also have much to do, but somehow it will all get done in time.  We drive to the mall to see our movie.

Annie didn't have great reviews, but we all agree it is a fun uplifting movie worth seeing. We all thought there were some strange musical choices made in the updating of the movie, some of the songs didn't fit the story, but those songs didn't detract from our enjoyment of the film too much.  Even Steven, the only male in our group agreed it was a fun movie.

It is not too late when we get out of the theater, so when we get home I start getting the house ready for tomorrow.  I vacuum and set the table, and hide the accumulated odds and ends from daycare that take up room in my house.  Some things are left undone, this is okay.   My house doesn't have to be the neatest house right now, the important thing is that everyone will be together. 

Sunday, January 4, 2015

Saturday, December 20

This morning Sean and I go out to the Modern Diner for breakfast.   We are supposed to be talking about our experiences with cancer, but instead talk about many other things.  I know Sean from church, he was my Alex's mentor when he was in the eighth grade coming of age class. I don't see people who go to Sunday services that often, since I am usually in the kindergarten classroom.  Sean has been cheering me on throughout my cancer journey, and we decided it might be nice to talk in person, rather than on line. 

If you have never been to the Modern Diner for breakfast, it is well worth a visit sometime.  They have one of the most extensive omlet menu's I have ever seen, serving combinations like bree with apple and maple bacon;  kilbasa and cheddar, and many other delicious combinations.  It is all served up in a1940's era dining car, with cool art deco details.  Not in the mood for an omlet, both Sean and I  got eggs with corned beef hash, toast and hash browns.  Great minds think alike.

I finish up most of my holiday shopping on Hope Street in the afternoon.

Sunday

I am a greeter at church this morning.

The atmosphere is very festive today, everyone is excited about our pick up Christmas pageant.   This is the Christmas story told with a Unitarian Universalist twist.  While the story is being told, children from different grades come to the back of the church and get into costume to take a part in the play.  Since I am already near the entrance of the church, I help out with the costuming.  We have many of the usual characters, then add in some of our own.  A dancing and twirling second grade angel leads a parade down the center aisle, followed by the littlest angel, a toddling one year old barefoot love who has recently learned to walk.  We quickly help the children and adults find costume pieces and send them off toward the manger scene.  Our special baby is a tiny infant, one of the newest members of our congregation.  There is also a big brother in the manger scene, keeping a careful watch over his baby, with Mom and Dad.

There are traditional hymns sung at appropriate places throughout the play, ending with our star of wonder, carried down the aisle by a boy high above the ground on his father's shoulders.  A star of wonder indeed.

Once the pageant is over, Steve picks me up so I can be freed from my chemo pump.  I take a short nap and then Steven, Alex,  Filipa and I go hunting for a tree.  For years we have had good luck buying one on the twenty first at the old farmer's market behind the Paul Cuffee school in Providence, but for the last couple we haven't able to find it.  We thought it might have moved, but when I was out that way last week I noted there was a tree stand, the same one we used to buy from.  We head over to find it today, and there is no trace of it having been there.  Am I imagining things?

We go out to Atwood Avenue in Johnston.  I saw a stand out this way when we visited Dr. Lentrichia last week.  This turns out to be a good choice, since all of the trees on the lot are on sale today.  My feet are hurting again, so I opt to stay in the car while Steven, Alex and Filipa choose a tree.  They find a beauty, and the attendant cuts it down to size for us.  When we get home we place it in the tree stand and bring the decorations up out of the basement. 

This evening my family and I will eat dinner and decorate the tree by candlelight as we celebrate the winter solstice.  It is not often that I have this day off from work, so it is nice to have extra time to prepare things in the light of day.  Once the sun goes down we only use candles to light our way.  We have celebrated the solstice with our children since they were very young.  It was our own special holiday that no one else in the family celebrated, a way to be together just for a short uninterrupted time in a season filled with so many out of our house celebrations.  We still celebrate Christmas with our friends and extended family, but this has always been our own special family time.

Ayla is working until six, so Alex, Steven and Kaileigh help to prepare dinner while we are waiting.  Steve gets our lasagne ready, Kaileigh makes up a salad, and Alex bakes some brownies.  I get the table set, and the sun starts to sink in the sky.  We light our first candle, and Filipa makes a wish.  We take turns making wishes as we fill the kitchen with light. Soon Ayla and Chauncey arrive.  We eat a leisurely and save dessert until we are finished decorating the tree. Ayla and Filipa put the lights on, then we all help hang ornaments.  We have a lot of decorations, but we manage to get them all on the tree.

We take a break for some peppermint stick ice cream brownie sundaes.  I have forgotten to buy whipped cream thinking that the can in the fridge is full, but find it is almost empty.  We hope it will last for all of our sundaes, and somehow, it does.

Once Julia gets home from work, we move into the living room and gather up our gifts for each other.  We pass things out one at a time, taking turns and watching as each person opens their gift.  It is such a lovely, intimate way to celebrate. I love our solstice together. 

Saturday, January 3, 2015

Friday, December 19: The last Folfox

I get up early and take my last shower for the next few days.  I try to get everything together that I will need today, I don't want to forget anything.  I am not in the mood for the sandwich cart, so I bring some grapes and cheese with me.

My appointment is at eight twenty which means I could get out early if all goes well.

Today is supposed to be my last folfox treatment.  Steve and I talk about it as we walk in.  I am nervous that my white blood count will be too low today.  I am afraid they won't be able to treat me.

 Steven and I split up at Fifth Street.  He goes on to Seven Stars to get me some olive bread to have with my lunch, I head over to the Fain building.  Faye takes me in as soon as I get registered, and since I am one of the first in, I get my pick of all the rooms.  Because they are expecting such a busy day today, we are in the Mega suite, and I choose the same penthouse pod I had last time.

I get my blood drawn and then see Bess to get have my blood pressure checked and get weighed.  My blood pressure is very low.  If only I could give a little of my low blood pressure to Steve.  My weight is back to where it was pre-all of this stuff happening.  Even a couple of pounds more.  I liked it when it was a few pounds less, but know my current weight is good.  It is better to be a little over before I have surgery.

We wait for Dr. Safran to see us.  He tells me my white blood cell count is a little low, but he thinks it will be okay to treat me anyway.  It is close to borderline, which he decides is good enough.  He tells me that even though this is to be my last folfox for now, the side effects will most likely continue to get worse before they get better.  I can expect them to worsen over the next two months, then they should gradually subside.

I ask if he has counted the spots on my liver, and he invites me to see my scans, the first from June and the second from October.  In the first scan, there are a lot of spots on my liver.  A. Lot.  There is a big blotch where those veins are exiting my liver.  It looks pretty scary.  I can't believe how bad it looks.  In the scan from October, things have shrunken down considerably, but it is still pretty messy looking.  The last scan was six weeks ago.  I will have another on twenty ninth to see how things look now.

We discuss the liver and the colon surgery.  It looks like Dr. Charpentier and Dr. Lentrichia don't operate in the same hospitals.  I tell Dr. Safran that I don't want to switch surgeons, that I would like Dr. Lentrichia to repair my colon, even if it means an extra surgery.  He likes this idea.

We make an appointment for the thirty first, New Years Eve.  By then he will have the results of my CT scan, and we can make a plan for the next phase of my treatment.  I think this will be a good way to end this year.

While I am getting my chemo, Dr. Safran stops by to tell me my cea level is two.  In a person without cancer, five or below is considered normal.  This is more good news.

In the evening, Kaileigh, Alex, Steven, Jill, Brian, and I take Sara out to Flatbread Pizza to celebrate her birthday.  None of us have been here before, and we enjoy everything about it.  We finish our meal with some cupcakes and a round of Happy Birthday.

This has been a most excellent day.



Friday, January 2, 2015

Sunday, December 14

When I get to church this morning, the first person I run into is Martha.  She has something for me.  She was hoping to give it to me last night, but she didn't see me.  I wondered what she was talking about.  She had been to the Sr. High Youth Group Coffee House.  It had completely slipped my mind.  I had every intention of going to that, and then, completely forgot about it.  Completely.  Chemo brain is such a weird thing.  I hope that when I am done with this my memory comes back.

Martha gives me a bag with something wrapped in tissue paper.  When I slowly unfurl the paper, I find a fine red felt fox.  She is beautiful.  Martha runs the Girl Effect sale, and saw her when she was ordering.  She only ordered one, just for me.  This is just the sweetest thing.  I think I will name her Martha.

It is funny, because I looked at the felted animals that were available at the sale and thought that if there were a fox I just might have to get one.  Martha is a foxy one!

We learn about Hanukkah in Sunday school today.  We play dreidel and make some paper menorahs to help us celebrate when it begins on Tuesday.  It is our last class before we break for two weeks, so we also make felt Christmas Trees.  The children are all so excited about the holidays.  Some of then celebrate both, some are just learning about Hanukkah.  It is a magical time of year, anyway you celebrate it.

By the time I leave church, my feet are so achy, and I don't feel so well.  I am invited to a birthday party for one of my daycare children, but decide it will be best to go home and take a nap.  Friday I am supposed to get my last folfox treatment, and I don't want to push myself and get sick.  Instead I go home and take a long nap.

When I awaken, I still don't feel that well, and my sisters are coming over for dinner this evening.  With much help from Ayla and Alex, we manage to get everything ready before they arrive.  My sister Jill had a birthday just after Thanksgiving, so we are having a little party for her.  She doesn't know, so it will be a surprise for her.  Ayla makes one of my sister's favorite meals, mac and cheese with sausages and broccoli.  For dessert, a cake from Pastiche of course! It is a delicious celebration.
After dinner we test out a game for the table on Christmas morning. It is called WhatchamaDraw it.  There are cards with drawing cues on them, things like draw an animal that has a chicken head, a pineapple body and duck feet.  You then have three minutes to draw.  It is hysterical to see what each person comes up with.  There is a competitive facet to the game, but we chose to enjoy each creation rather than be judged.  We do challenge one person to figure out who has drawn what.  This makes it very interesting.

While everyone is still playing, I go out driving with Allie.  We need to get some night time driving in, and is not just dark, but also a little rainy. 

When I get home, Steven and the kids are still playing the same game.  It is sure to be a hit on Christmas. 

Monday

Allie and I go to driving this evening.  She takes me to Bed Bath and Beyond to do some Christmas shopping.  She is very helpful in advising me about a gift I want to get for my sister Sara.  Since we are in Seekonk, we decide to go to Target too.  I am on a mission to find a hot water bottle for someone with cold feet.  At both Bed Bath and Beyond and Target the sales people think I am talking about one of those sippy cups grownups carry tea or coffee around in.  This is very amusing.  Neither store has what I am looking for though.

Tuesday

We make paper Hanukkah menorahs today.  They are made using rectangles of paper for the candles, pasted onto a backround which has a larger rectangle menorah.  We keep one candle which has a paper flame on it stored on the back of the paper in a pocket with the flames for the other candles.  This is the shammos candle, the one which is used to light all of the other candles.  Each night, the children can light one more candle until they are all lit.  This evening is the first night, so everyone will have a paper candle to light.  We also play dreidel with chocolate gelt.  This is so popular, even my two year olds figure out how to spin the top to play.

In the evening I have knitting, although I arrive late.  I don't get much knitting done, but I do get to eat cookies!  Linda has been baking and brought some in to share.  Lonnie, Sarah and I make a good dent in the cookie supply.  Someone has left some yarn for us today, a nice bag full.  It has some good soft wool that will be perfect for items for our mitten tree, and some needles that will come in handy when we teach newbies how to knit.

Wednesday

I have a nine thirty appointment with Dr. Lentrichia today. He does the usual inspection of my belly, my bag and my stoma.  Everything looks good.  We talk about my chemo and how that is going.  I tell him about my visit to the liver surgeon, my MRI,  and my last visit with Dr. Safran back in October.  It all seems so long ago.

He tells me he has had patients who have had great success with the folfox treatments.  When things go very well with the treatments he tells me there is often nothing there to remove when he checks in on their colon.  He thinks this may be the case with me.  This is great news.  I love that Dr.  Lentrichia always takes time to sit down and understand what is going on with me.  I appreciate his attention and sympathy to my situation.

I leave with an appointment for next month, and a big hug.

When I get home, I find that I an locked out.  I have dropped Steven off downtown to cover a story, and forgot that I didn't take my keys on the way out.  My feet are still feeling funny, so I sit in the car and clean out my handbag while I wait for Sara and Alex to return.

In the evening, Julia and I go shopping on Thayer St.  I am still looking for that hot water bottle and am sure Pleasant Surprise is the place to find a cute one that looks like some kind of cute animal.  I don't have any luck, but we do have a good time.


Thursday, January 1, 2015

Thursday, December 11, 2014

Today is my grandmother's funeral.  I have given Sara the day off so she can go to the whole thing.  Steven and Filipa will cover for me so I can go to the morning service and the grave.  I get to the funeral home just before they leave for the church service, so I am directed to get in the car line up and wait.  I am glad I have joined the procession, since I have no idea where the church is.

When I arrive at St. Aidan's, my two sisters are already seated in the last row.  I join them and we wait for the service to begin.  From this vantage point, we will know what to do, when to sit, when to stand.  It will be much easier than the last time we were in a catholic church together.

The church is large, not the same one I remember visiting with Grandma when I was younger.  It has lots of light and colorful stained glass windows.  It is very clean and modern.  When the priest comes in I notice his vestment is adorned with the same floral pattern that embellishes the cloth they cover the casket with.   This seems like such a fancy detail to attend to for such a somber event, but it looks nice.

The drive to the cemetery is full of twists and turns, and I wonder if I will find my way out.  The cemetery is maintained by a local Catholic parish.  It is nestled in a neighborhood of ranch houses, not far from the Massachusetts border.  It is long and narrow, growing wider and more dense as you travel down Curran Road to the main part of the cemetery.  My grandmother is to be buried next to my grandfather, Fredrick W. Boyd Jr, who my father was named after.  His grave is located in an older, less dense section of the cemetery. Curran road runs along one side here, and some woods on the other.  The surrounding area is more interesting than the main section where there is nothing to be seen but graves in every direction.

 It is cold and the sky has been threatening to snow all morning.  As we arrive,  gentle white flakes start to fall.   The funeral director hands out umbrellas to people as we pass by.  The casket is already in place by the time I join the group of family and friends gathered. The priest says a few final words, and invites everyone to the Filibuster club for refreshments.

I stop to give hugs to family before I returning home.  As people file out away from the graveside, a group of young women have gathered around a basket of flowers set by the casket.  They are plucking pink roses from the large arrangement, because their Nana would have insisted on it.  They are laughing as they say this, uttering the same words they have heard her say in the past and knowing this is just what would have made her happy.

t doesn't take me too long to find my way back to familiar roads as I leave.  I blast the heat and am grateful for the hand warmers hidden in my mittens.  I return home to happy children, just in time to start lunch.

I skip stained glass this evening so I can spend some time with Julia.  I don't want her to feel like she has moved into a house where we will not be here for her.  She goes out to have dinner with Ayla and Chauncey, so I work on the basement until she gets home.  We talk until we are too tired to talk any more, then go to bed.

Friday

All is back to normal this morning.  In the evening, we go to see The Hunger Games movie with Ayla, Chauncey and Julia.

Saturday

I clean the basement for a little before going shopping with Anna, then do a little more after.  Everything that was wet is out now, and the floor is dry.  I am still trying to dry out the area rug that is down there so I can remove that.  There are so many things that need to be sorted and gone through still.  I have a mountain of craft supplies, wrapping paper. games and other odds and ends piled on the table the rug is on.  Time to start sorting and putting things away.  I do this for as long as I can before I get too bored, cold or tired.

In the afternoon we go to my friend Elizabeth's to bake Christmas cookies.  She supplies the sugar cookie dough, I bring the gingersnap dough.  Our children, her four, my three, Josh and Chauncey cut and decorate the cookies.  Elizabeth and I get them baked and cooled and try to keep the mess under control.

We started baking cookies together when our kids were much younger and always enjoyed it so much.  We haven't been able to get everyone together for the last few years, but this year through the determination of Ayla and Malani we found a time that would work for everyone.

Before starting our production we power up on some delicious Indian food Elizabeth and Sundar, her husband have prepared. We feast on home made dosas, thalis and somosas I have picked up from Not Just Snacks.  Once we are filled with good food, it is time for the cookie making to begin!

Cutting out the cookies is done as quickly as possible, so the kids can get to their favorite part,  decorating.  This is always fun, as everyone comes up with their own style and theme.  Alex has cut out a few shapes by hand and creates some very unique treats.  Some add accents with candies, others are just into the frosting, which can range from lightly iced to loaded.  In the end they are all colorful, fun, and most important, delicious.



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