Thursday, November 20

Had trouble getting to sleep last night, but I am not sure why.  Could it be because I have pretty much given up exercising?  It is so hard to fit it in when I am staying up later.  This means I sleep later too.

We took the kids to the playground today.  They had fun pulling the new wagon around and breaking up the sheets of ice that formed in the fountain overnight.  Picking up large pieces of ice and dropping them on the pavement is such a fascinating thing for small children.  I am not sure if it is the power they feel causing permitted destruction, or if it is mesmerizing to see the ice break and scatter in a hundred different directions.  Possibly it is a little of both,  but it is something that is always fascinating and they will not grow bored with all winter.

Kaileigh comes for dinner and we go to stained glass.  She has a terrible cold, and has not felt well all week, but is feeling better today.  It is hard for her to talk, she doesn't quite have laryngitis, but the sound doesn't always come out when she tries to speak.

The sign I made for my teacher.  He needed something better, so I did something about it!

 At the beginning of class my hands  are very cold, and I need to keep my hand warmer filled mittens near by for frequent warming.  By the end of the class things have warmed up considerably, and my fingers are fine.

Friday, November 21

It is officially one month to the beginning of winter, but you wouldn't know that by the temperature outside.  Inside it is chilly when I wake up, I keep the heat at fifty four at night, otherwise it gets too warm in my bedroom.  Even at that temperature, it is so warm under the flannel sheets, comforter, blanket and quilt, I sometimes need to throw the covers off to cool down.

I hear Alex moving about the house getting ready to go to Amherst to meet with his class advisor. He is going to sign up for classes for the next semester. I get up and run downstairs without putting any socks on to say goodbye to him before he leaves.  It is a week out from chemo, so I don't anticipate that my feet will feel too badly.  I manage to get in a quick hug before I go flying back up the stairs in search of my socks and slippers.  After seven days, the tingling can still be pretty bad, I think I lasted about two minutes with bare feet.

I have been thinking about how people with little money for heat would have to deal with this, and it wouldn't be easy. This could certainly be a reason to resign yourself to bed.

I gather together clothes so I can take a shower.  Alex has showered before me, so the water runs hot right away, and the tile on the floor is not so cold. Before I get in, I pull off my bag.  I have a smaller closed style on that is meant to be worn for maybe twenty four hours and then be disposed.   Although I changed last night before bed, I can tell that if I don't change it now, it will start to work its way off of me in the next few hours.  The adhesive is creeping off my belly, creep, creep, working its way to the edge of the wafer.

Today the kids at daycare are pretty excited.  We are going to have a lantern walk this evening.  These walks are a tradition especially in Germany and in Waldorf schools throughout the world.  They usually happen around November 11, which is known as Martinmas.  It signifies the turning inward of thoughts and of our inner light in preparation for the winter months ahead.


We have been working on our lanterns for the last two weeks and they are beautiful.  We started them by painting balloons with glue and sticking colorful tissue paper on them.  It is always a little difficult to get them finished, but during some quiet times, I was able to help the lanterns along.

Nine children and their parents arrive back at my house shortly after five, with dinner to share.  Once we are full of warm food, we set off around the block, each child holding their lantern, glowing with the light of a battery powered candle.  It is chilly, but the lanterns are so magical and the children so excited, it is a noisy, jubilant procession.


Once we arrive back at my house we warm ourselves with mulled cider, hot chocolate and fox tattoos all around!

It has been a lovely way to celebrate the coming long winter nights!

Monday, November 17

It is rainy today, but not as cold as yesterday.  I am ready for the chill though, three layers and hand warmers. This cold problem is solved.

I think taking it easy yesterday was good for me.  I feel very joyful today.  My youngest boys seem to have grown over the weekend, they feel heavier and look a little taller today.  It is funny how that happens sometimes.

We make cookies and bring them to our neighbors. The rain lets up long enough that we can make our walk and stay dry.  This is especially good when we are doing a cookie delivery, wet cookies would delight no one.

My friend Brett has an art show at Chez Pascal this evening.  It's nice to go out and see her art hung in a public place.  Although it is pouring rain, there is a good showing of people, a few are friends that Brett and I have in common.  It is warm and dry, there are tasty appetizers to snack on, friends and nice people to meet and talk to.  I think her show is a success.

 

One of my favorites from the show.

I walk home to get ready for my Happiness group to arrive.  Steve walks to the library on Hope Street to cover a community meeting with Aaron Regunberg, our newly elected state representative.  MY meeting is good, we discuss changing the format of our meetings, something we seem to gravitate toward doing this time of year. 

I am happy to have made it through this day warmly, and decide that sleeping in my first layer of clothing will be my new habit.  It feels so old fashion.

Tuesday

Today my brain wakes up a little more.

As my sister and I parade around the block with only three little ones, I think to myself, what the heck am I doing?  Three kids is almost enough to keep one person occupied, never mind two, and certainly not enough for two people to make a living.  I feel good, I should have a full house.  I need more kids!

An Alligator Lies in Wait

I walked to church for knitting this evening, even though it is thirty five degrees outside.  With my mittens and hand warmers, all goes well.  Steven has a community meeting a Brown, so we walk to the Brown green together.

I am meeting with the Religious Education Committee to catch up on what the youth task force is doing, then over to knitting.

Wednesday

Four kids today.  We paint pictures of robots, and take a chicken walk.

Painting Robots

Our Chicken Friends

  I put some alpaca shoe liners in my boots to see if they will help keep my feet warmer.  I bought them last year at a fiber festival Kaileigh and I went to when I visited her in Ithaca, NY. Alpaca fur is one of the warmest natural fibers, and the woman selling the liners told me they should keep even the coldest of feet warm.

Even though it is only in the lower thirties today, with my hand warmers and the shoe liners, I am toasty warm.  I find that sometimes I get so warm, I am sweating!

Mittens and Hats Today!

One thing I am enjoy doing on these chilly days, is sticking my hands into warm soapy water to do the dishes.  Usually this job is nothing more than a chore, but  now it has taken on a whole new dimension.  I let the water get warm and can't wait to stick my hands in.  Suddenly, it feels like such a luxury. 

This evening we go to see Barefoot in the Park at Trinity Rep. with Ayla and Chauncey. The stage is fabulous!  They have created a small apartment on the stage, with walls that open to reveal the small room inside.  Between acts you can see the stage hands redecorating the apartment for the next scene.  It is so clever. Unfortunately we are sitting in front of a row of women who can't help but comment throughout the show, but they are entertaining.  We have a great conversation about their comments after the show.

The play itself is good, although somewhat dated and this adds to its charm.  It is fun to discuss the social norms of the time versus those of now with Ayla and Chauncey.  It is an interesting experience to put aspects of the play into perspective for a younger generation. Even though the people who commented throughout the play were older than Steven and me, they could have gained some insight from our conversation as well. 

Saturday, November 15

I am moving slow today, but manage to make it to my hair appointment on time.  No bag problems like last time!  Leslie and I spend our time together talking about the elder care that she and her sister are currently giving her mother and her aunt.  She remembers her mother doing the same for her elders that Leslie now finds herself doing, and wonders who will be there for her when she gets older.  It is one of those questions you never think about when you are younger, and then suddenly, there it is staring you in the face, making you wonder what your own future will look like when you get older.

Alex takes me on a run to Target, dropping me to shop while he gets his hair cut.  I forget that shopping on a chemo weekend is not a great idea until too late.  I see a Little Tikes wagon in front of The Children's Orchard, a second hand clothing store near the Supercuts Alex is getting his hair cut at.  I have been thinking I need a new wagon for some time, and have wondered if I would find one similar to what I already have.

Most newer wagons seem to have seating for only two children facing each other.  This is very limiting for the use of a wagon. Sara and I take a side off of ours, and let three or four kids ride side by side, watching that they stay seated and sit back so they won't fall out.  Wagons are also useful in hauling things around, like coolers and odds and ends for outings at the park. The flatbed really is the most useful wagon for my purposes, I just haven't seen any in the stores in a while, and paying for shipping for something online just seems too outrageous.

This wagon is perfect though.  It is similar to what I need to replace, with better wheels for tighter turns.  I can't pass it up.  This is probably not the best time for me to be buying this wagon, but there it is, and I am shopping with chemo head.  We take the sides off and slide it into the back of Alex's car.  Did I mention that the wagon I am replacing this one with is about twenty years old?  I have changed the wheels and axle on it twice, and it really has had a good run, but the axle is starting to wear through the plastic, so it has this tilt to it.  I does really need to be replaced.  Maybe this isn't such a chemo headed mistake.

Shopping totally wipes me out, so when I get home I settle in for a nice nap.

Later, Alex hangs out with me and we spend our time talking about life and relationships.  It is a nice way to spend and evening.

Sunday

I can't get out of bed today. The forecast is for twenty five degrees, and I can tell by the coolness of my room it must be cold out.  I just know that when my feet hit the floor, it is going to hurt, even with socks on.  I need to get ready for church, but I can't convince myself that getting out of bed will be good.  My feet and finger tingles are strong and painful now and  I lay in bed for three hours before I finally make myself get up.  I need to cut out turkey parts for our Sunday school project, and it is not going to get done in bed.

As soon as I start cutting the construction paper, I know I am not going to make it in today.  With every cut I make it seems like my fingers get colder and more painful.  I manage to get all of the pieces cut out, and Steve offers to brings them in for me.  I am missing out on our kindergarten thankfulness project, a Thanksgiving chapel on gratitude, and visiting with the Sr. High Youth.  This makes me a little sad, but I still can't get myself to make it out the door.

Alex gets up as I am wondering around trying to find ways to warm my fingers and feet.  I have on mittens, multiple socks and have turned up the heat.  He asks me why I am not using the handwarmers that Ellie sent me.  It is one of those moments where the most brilliant of light bulbs illuminates the room.  Of course, that is exactly what I need!  He gets me two packets, opens them up and activates them for me.  I place them in my mittens and in minutes I am pain free!  It is the most amazing thing, I feel like I can live again.  I even feel like I could make it to church, except that it has already started so by the time I got ready to go, it would be almost over.

Alex makes me some oatmeal, Steve makes some hot cocoa, and soon I am warm and fed, and life is good again.  I wish more problems were so easily solved.

Allie and I go for a drive to Cumberland and back today.  As I get into her car, I am dressed for the cool weather and clutching my hand warmer filled mittens, and then in the sunny, warm car.  It is better than being cold I guess.

Later in the afternoon, Steven and I finally make it to The Christmas Carol at Trinity Rep.  We are there at the right time on the right day, and we meet Betsy who has some comp ticket for us.  Steven has met her through some of the work he has been doing. She is also a cancer survivor, and wants us to have a fun night out.  She also offers us four tickets to see a preview of Barefoot in the Park on Wednesday.  We are totally on board with that.  We immediately text Ayla to see if she would like to come along to see that show.  How lucky are we, to have the opportunity to go to Trinity twice in one week?

I have been to the Christmas Carol a few times over the years, and some years it seems more serious and grim than others.  This year it is a joyful music filled version, and we both love it. The costumes, the sets, and the acting is all wonderful.

The show started at five, and there was no intermission, so we are out into the night by six thirty. I am so warm and cozy with my hand warmers I can even face the chill of the night.  It is such a good ending for a day that started so cold.

Friday, November 14

Chemo 10

It is warm and sunny this morning, so Steve and I walk over to Fain 3.  I check in with Marissa, and get called back right away.  Since I am only receiving chemo this morning, things are simplified.  I don't even have to leave my pod to get my blood pressure and weight done, two nursing assistants come to me shortly after my blood is drawn.

Marisa

I let Faye know of my latest side effects,  mainly my feet being more tingly, and that I noticed a bruise on my foot this morning.  They are always asking about bruising, so I figure it must be significant.  I ask what would cause this, and she tells me it might be that I have a low white blood cell count.

While I am waiting, James Ford stops by to visit with me and Steven. We have a very pleasant visit as I sit there waiting to find out the verdict on my treatment.

It takes a long time for my results, which of course can only mean my white blood cell count is down.  After two and a half hours of waiting, I am told this is in fact the case, and I am given two options: I can have my treatment today, or I can wait a week and come back.  I don't really see what the problem is here, if I can have the treatment today, why on earth would I leave and wait another week.  I have already invested two and a half hours of waiting, and in another weeks time, I could actually be sick.  Right now, I feel fine, so why tempt fate?

After I let Faye know my decision, she tells me that we will switch to a three week schedule, to allow my white blood cell count to rise between treatments.  At this point I am over being annoyed or surprised.  This means I won't have to come in the day after Thanksgiving anyway, I will be back on December 5th.

Shortly after James leaves, I start my chemo, and feel very tired.  For the first time since I have been having these treatments, I take a little nap.  They give me benadryl to prevent the itchy hands, and that usually makes me fuzzy brained, but I have never felt like I needed to take a nap before. 

When I wake up, I find a text from Brett, who wants to know if I would like some company.  I would.  Steve needs to leave to attend an event downtown, so it is nice to have another visitor.  Since my appointment started at 8:20 this morning, I thought I would be all done by lunch time.  Now it is afternoon.  The yarn I brought to start a project turns out to be wrong for this particular project, so I don't have much to do.  I am glad that Brett has come by.  During our visit, as I am telling her about trying to explain my sloshy feet, she comes up with a brilliant analogy.  It feels like when you are standing close to the shoreline, where the waves wash over your feet, and then drag the sand out from under them as the water washes back into the ocean.  That I just the way my feet feet.

Just after Brett leaves, Kaileigh and Josh arrive.  Kaileigh thought she would not make it to the hospital today, but due to my late start, I am still there. Josh is on his way to New Jersey for the weekend, and is dropping Kaileigh off so that we can take Filipa out for her birthday this evening.  Josh visits for a short time, and then heads out to try and beat the Friday traffic.  Shortly after he leaves, I am hooked up to my pump, and ready to go myself. Kaileigh and I walk back to the house.  It is three thirty by the time I get home.

Around five, all of my kids appear, and we take Filipa out, first to the Gourmet House for some Asian food, then make a quick stop at my house for some cake and a Happy Birthday song. From there we go to see Big Hero 6, which turns out to be the perfect movie for celebrating Filipa!  It had so many things in it that she loves.  We all loved the movie too.

As I get ready for bed this evening, I find out how bad feet tingles can be.  I put on my pajamas standing on the rug which is on the tile floor in the bathroom.  When I step off the rug onto the cold floor, I get an intense and shocking tingling sensation in my feet.

I panic because there is no rug between the bathroom and my bedroom, so I run as quickly and lightly as I can to my room, calling to Steve that I can't give him a good night hug and kiss unless he comes to where I am.  Of course he comes in to see what is wrong, and I realize that my reaction is a little silly.  I could have put the socks on that I had just taken off before all this happened, but instead I had a panic moment. I put some socks on before I climb into my bed and hope things will feel better in the morning.

CancerGirl and the Fountain Bandits! A comic by Steve Ahlquist

Monday, November 10

My feet feel fat and tingly when I wake up, when they are neither fat, cold or asleep. I have been trying to figure out how to describe the way this tingling sensation feels.  It has been very difficult to come up with and adequate description.  I tried a few things out on Steven last night, but he couldn't relate to them.  I think I finally have it down though. 

My first and favorite attempt was that it feels like the world is shifting beneath your feet, and they are moving, but in reality they are not.  Steve just shakes his head. The next try was that if you were to have a soul, or a ghost inside of you that is trying to pull away from your feet, and it can't get free.  Like there is some kind of magnet pulling it back inside yourself.  This explanation received a shake of his head and a very confused look. After telling this to Kaileigh and Ayla, they decided I am like Peter Pan, with my shadow sewn to my feet, but it just keeps trying to get away.  Now I am an Elphaba Peter Pan, with a shadow that keeps trying to get away and can't get caught in the rain.

This is the one he could get, and I think it might be close: the feeling you get when you have been in waves and you later lie down but you still feel like you are moving with the waves.  Except that it is only in my feet and it comes and goes at unpredictable times.  At least it seems unpredictable so far.  It happens most when I am standing or sitting, I haven't noticed it much when I am moving.  Sometimes, I feel like I need to sit down right away, but today I discovered that if I remain standing still the feeling will go away. I could call this sloshy feet.

Tuesday, Veteran's Day

I have kids today, just because this is such a difficult holiday for people. Some have it off, but most have to work.  I have three littles and three bigs today, with one more little coming at lunch time.  It is a warm and sunny day before the cold snap that is coming, so we spend the morning at the playground.

I decide to walk to knitting tonight, which I haven't done in a while. Even though the day has been fairly warm, I dress with all of my layers, in case I get cold.  I have on double pants, socks, and tee shirts, a hoodie, a jacket and mittens.  I am nice and warm until I reach knitting, where I have to immediately start peeling off layers!

Wednesday

I didn't get to go to the grocery store with Anna this week, so we go for a walk in the evening.  It is a pleasant walk, which passes very quickly.

Later, when I want to write about my day, my hands are too cold, and I keep them under the covers in my bed trying to warm them up.  They get warm, but I don't want to put them out into the cold air, so I just go to sleep.

Thursday

Kaileigh makes it down from Somerville to go to stained glass this evening.  We are having our holiday party early, because once we get to Thanksgiving, everyone gets so busy.  Everyone brings something, Kaileigh and I bring olive bread and a cranberry salad.  Janet and Judy chip in for gluten free ziti from Luigi's in Johnston, Alyssa brings chips and salsa, Corin makes a gluten free vegetarian quiche, Andrea brings wine and Tony brings his famous cheesecake! It is a feast.  We even manage to get some stained glass work done too!


Life, despite it's detours and temporary setbacks is good.  Here is a picture of the world I choose to live in: http://davidkanigan.com/2014/11/16/gate-a-4/ 

Enjoy!

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.