Tuesday, September 30, 2014

Tuesday, September 2

I get up to a very messy house this morning, thanks to a wonderfully busy weekend.  I quickly put things is order before the kids arrive.  It is orientation day for two schools that some of my former babies will attend, so they come and leave and then come back again.  By the end of the day we have a full house.

Sara waits for me to finish with the kids today so I can go with her to visit my dad.  He is having trouble getting his dinner to his mouth, dropping food because he is so shaky.  He is also talking about being in a stadium, and waiting for someone to film something.  We ask him where the stadium is and he points out the window.  He tries to explain about some movie being made there.

Sara gets the resident who comes and talks to my father.  He answers all of the questions he is asked right, and has no problem following the requests that are made of him, pushing hands and legs against resistance, following things with his eyes.  Everything seems fine.  Then I ask him about the football stadium, and we get this confused answer.   The only thing the two residents can come up with is that he may be confused from having dialysis treatments two days in a row.

He is scheduled to have the rest of the index finger on his right hand removed tomorrow.  There is infection in the bone that needs to be removed, and this seems to be the only way to eliminate it.  Usually Monday, Wednesday and Friday are his dialysis days, but since he had a bad reaction last time he had an operation on the same day, Sara has asked that they do the two procedures on separate days.

We get my father settled back into his bed, and tuck him in for the night.  He seems tired and will be up early for his operation. 

Sara drives me to knitting, and I want to show her the yarn bombing we have done.  I am surprised to see that it is gone.  It has looked so pretty on Sunday when I stopped by to check on it.  We talk about it at knitting, and hope that someone has taken it down and done something creative with it, like decorated their dorm, or needed it for their winter wardrobe.  I am afraid that someone took it down because it is a form of graffitti, and they didn't like seeing it there.  So many people seemed to enjoy it, but it the end, it was never meant to be permanent.

Wednesday, September 3

I get up and manage to get all of my gardens watered this morning.  It has been hot this week, and I have been so busy, I haven't been able to get to them.

Sara comes early, after stopping at the hospital.  They took our dad in for his operation before she got there. 

We only have a few children today, a new baby and a new two year old among them.  It is always nice to be able to start our new friends off slowly, it is overwhelming to be start daycare.  It is also easier to be slow while dealing with my treatments and time needed to tend to my dad.

We take an M&M walk today, this is the way we teach the new children how to follow the rules of walking around the neighborhood.  They want an M&M, so they listen very carefully for what to do.

It is an early day, everyone is gone by four forty five.  Steve has gone to Connecticut to cover a fast food rally in the morning.  He is driving some workers from RI to Hartford.  I run out and just miss the bus.  I see it go by as I am walking up my street. I want to go visit my dad before I have a meeting at church this evening.  Usually the next bus comes quickly at this time of day, but for some reason it seems to be taking forever. 

Dad seems to be doing much better this evening.  His index finger on his right hand is now gone, and he has a bandage up to his wrist.  He feels good, and is much easier to understand.  He is not shaky today, and he doesn't drop his food.  I visit as long as I can before I have to leave.  He is tired and wants to go to sleep.

I get to Prucom just as it is starting.  This is our first meeting of the new church year.  It goes well, and is productive.  I feel more comfortable than I did a year ago when I first came on this committee. People are glad to see that I am doing much better than I was at our last meeting, which was just as my whole cancer drama was beginning.
Cathy gives me a ride home, and we catch up on what our summers have been like.  It feels good to be starting the church year again.

I check my email and find a heart wrenching post from Steve's blog. It makes my whole body go numb and he is not even home to talk to.  I try to call him, but there is no answer.  He calls me back, but my ringer is still off from my meeting earlier.  Finally we get to talk.  He is okay, but I feel sick inside.  It amazes me, that after being together for almost thirty years there are still things to learn about each other.

Monday, September 29, 2014

Sunday, August 31

Wake up and get ready for church.

I check on childcare and everything is okay, so I go to the service.  After it is over, so many people who I haven't seen for the summer come over to say hello, with offers of help, food, company and rides.  I feel so well loved and cherished by my community.

When I get home, I clean a little while waiting for Sandy to come and unhook me from my chemo.  I start to get fuzzy brained as I wait.  My hands start to feel weak and I am getting nauseous.  I put on my psi bands to help alleviate the feeling.

After Sandy leaves, I make myself some soup for lunch and eat it slowly.  I have let myself get too hungry, and now it is hard to eat.

Steven and I bring Alex to Whole Foods for work, and pick up some groceries.  Steve drives, because I feel drunk.  When we get home, Steve puts the groceries away so I can take a nap.  We are going to bring some young friends to see Guardians Of the Galaxy. We have already seen it, but really want to share it with these friends whom we know will enjoy it.  Ayla, Chauncey and Allie are coming to see it with us too.

I sleep for an hour, and it takes the edge off of the dopiness.  As I sit in the movie theater, I can feel my brain returning to a clearer state.  It is so strange to be sitting doing something and slowly feel your brain return to you.

The kids really enjoy the movie, and it has been fun to see it with them.  I drop Steve and the kids at Gourmet House for some Asian food, and run over to visit my dad.  I only stay a short time, he seems very tired today.  I get back to the restaurant shortly after food has arrived, and have a good dinner.

I go home and get ready for bed, I am feeling very tired and my hands still feel weak.

Monday, September 1
Labor Day

We get up early and head to Horseneck Beach in Westport, MA.  We are meeting the Taylors, Ayla and Chauncey there.  It is a little cool and overcast, and we are some of the first people on the beach.

Saturday was Chauncey's birthday, so we celebrate today with an early morning pastry and bread party. It is lovely to be sitting in a big circle on the sand, with the waves crashing in the background, and the seagulls edging in on us for entertainment.  We sing Happy Birthday, eat and talk.  It is a lovely start to the day.

I have come to the beach hoping to go in the ocean.  Although the day is forecast to be very warm, it is not starting out that way.  It is overcast, the fog still burning off, and there is a cool breeze.  The moving air is making my fingers tingle.  The water temperature is pretty high, so the water does not bother me, but I am afraid that if I go in, my core temperature might drop down making difficult to get warm without the help of the sun.

Instead I sit or stand on the beach with my friends, enjoying the good food and company and delight in their enjoyment of the ocean.  I will look forward to a swim next summer.  We leave just as things on the beach start cooking.

After a nice shower to rinse off the sand and of course, change that bag, I go to visit Marcia.  She is a woman I know from church, and has told me she has something she thinks would be very helpful to me.  I can't imagine what it might be.  It turns out she has a problem keeping her hands warm, and is concerned about mine.  She has Raynaud's Syndrome which makes her hands very sensitive to cold, and has a good understanding of the difficulty I am having dealing with this problem.  She wants to give me a pair of fisherman's gloves she uses when washing fruits and vegetables.  Her husband had found them for her when she was first diagnosed, and they were a lifesaver for her. They are insulated and waterproof, and will allow me to get popsicles out of the freezer, milk from the fridge, and wash the table without getting cold fingers.    She measures my hand to order a pair for me, and lets me borrow hers until they come in.  This is such a lovely thing for her to do.  I am so touched by her concern and kindness.

Once I leave Marcia's house, I head over to Lippett Park, where Steven, Ayla, Chauncey and Powder are waiting for me to photograph our Cancergirl and Radioactive Man Comic.  We have a great time!

Later, as I am about to go visit my dad, Peggy stops by.  We sit on the steps and catch up.  Peggy is a friend I met at our knitting group, but she has been so busy lately, I don't get to see her much.  I am happy to spend these few minutes with her.  She has brought me a small, white, ceramic, origami peace crane with wishes for wellness.  It is delicate and beautiful.

When I get to the hospital, I find that my Dad has had a bad day.  He is frustrated that things are moving so slowly, and the long weekend has made things even slower. He doesn't understand why he can't get out of bed when he wants to, even though Sara and I have explained the reason to him many times.  He thinks he is fine.  Sara is trying to find out if he can have a shower this evening, and we are told he can't have one unless the doctor orders one for him. They sat they will try and get him one in the morning, before dialysis.

He is so tired, so Sara and I give him a kiss goodnight, and tell him to stay out of trouble.

I come home to find that Steven has finished our first comic.  It makes me laugh right out loud!

Sunday, September 28, 2014

Saturday, August 30

Allie and I have made plans to go driving this morning, but she doesn't wake up and I find her mom at my door at seven o'clock, the time Allie and I had agreed to go.  Lisa takes me to Stop and Shop and picks up cold items for me.  She brings me home and helps me unload.

Allie texts me just as Lisa and I get to my house, and apologizes for not getting up.  We make plans to go out at nine thirty, to go to Providence Place Mall.  We had agreed that she needed to learn how to get to places she would be driving to, that is why we have such interesting destinations this morning.  I still need a few pieces for my Cancergirl costume, and she needs to return some things at the mall,  justifying this trip.

We don't get much driving in, since the mall is ten minutes from my house, but we do have a great shopping trip.  I find the last few things I need for my costume, and this fluffy, pink, jackety, sweater kind of thing.  Definitely a chemo induced impulse buy.  It is soft and warm though, so I will wear it often, even though I really don't need it. Allie returns some things and finds some new clothes for school before we need to leave.

I need to get home, because Alex has the day off, and we have decided we would go looking for some art installations near Wickenden Street.  We start with lunch though, going to Federal Hill to find a restaurant called North that was highly recommended to me.  We park near Pastiche, where we will end up, and walk using the GPS on Steve's phone.  North turns out to be further away than we think, and then it is closed for the day for a private party.  What luck!  We go back to Atwells Ave and find a Mexican restaurant which is good, and not very expensive.  We stop by Pastiche to visit Ayla, because Alex hasn't been there yet.  Now we are all fueled up, and ready for our art exploration.

We find the Bird House and the Wire Arch which are located near Adler's Hardware on Wickenden, and then drive to Clifford St to find three more.  We are stumped by the last installation since the address is wrong, but find it as we are leaving on the corner of Point Street and Franklin.  It was well worth the search, as it turns out to be everyone's favorite.

We drop Steve to go and make dinner, while Alex and I go to visit my Dad at the hospital.  They have moved his room closer to the nurses station because he got out of bed without calling for help. His bed is alarmed so the nurses know when he gets up, but he wiggles so much it often goes off for no reason.  He really dislikes the alarm, and it aggravates him.

This room is on the front side of the hospital, and overlooks the parking lot and the highway.  Not much to look at there.  He seems okay, talkitive, but his speech is off, he is hard to understand. They don't think he has had a stroke.  Sometimes the dialysis at the hospital is harder on him for some reason.  Maybe this is the cause?  We are waiting to hear what they plan on doing for him.  The fall seems to have been caused from an heart arrhythmia, something they can't do anything for because of his other problems.  They think his finger has another infection in it, and we are waiting to hear when they can operate on it to take out the infected bone.

This is very anxiety inducing, since this is what launched us into a difficult episode the last time he was here.

After visiting Dad, we head home for dinner.  Steve has made some fish chowder and salad, and Dan and Walter are coming over to join us.  When Steve leaves to hang out with the guys, Alex and I go to the mall to buy jeans.  I stay focused on the jeans, and don't allow myself to look at anything else.  Oh wait, I need a cape for my Cancergirl outfit.  We end up getting a pretty turquoise towel that I can wrap around my neck kid style.

When we get home, I am done for the day!  Time for bed.

Side effects today:  Stiff thumbs that lock into a weird position, weepy, twitchy eyes with dark circles underneath, dopey and chatty.

Saturday, September 27, 2014

Chemo # 5

Friday, August 29th

I sleep in late today, waking at seven.  I don't feel any apprehension about going to chemo today, things have been going so well.

My appointment is at 9:20 today, so I don't feel so rushed.  I register at Fain 3, got my blood work drawn and sent down to the lab.   I see Bess, who takes my blood pressure and weight, and my drug update.  Still no extra meds needed!

Today I get to visit Dr. Safran, he is pleased with my progress.   All of my numbers are looking good, my liver function has gone up, and I am producing more hemoglobin, which is great for someone who is on chemo.

Faye is my nurse today, she is always so pleasant.  We check in with each other, I tell her about my side effects, she tells me of her vacation.  We are ahead of schedule today, because I don't need to have the iron supplement today.  This means that I get fuzzy brained much earlier, it usually doesn't happen until after lunch.

Claire comes by to do some Reiki on me. Each time she does a treatment on me, it is a different experience.  Today her hands feel cooler, but not uncomfortably so.  She starts out on the same path, but I feel like she has altered it today.

My bag is full of gas this morning, I haven't had any audible explosions, there must be a slow leak from my stoma.  I feel like a balloon that is slowly deflating.  I don't notice my bag is so puffy until Claire touches my belly area.  She doesn't touch the bag, rather, brushes by it with her hands.  It is nothing to her, I hope, but to me it is slightly embarrassing. 

Lenore brings by the lunch cart.  She is pleasant as always and offers me the usual choices.  I get a turkey sandwich in the marbled bread, which doesn't really taste like much today.  Side effects already.  At dessert time, I get pudding with a little cream cup.  This is the way that Lenore likes to eat it, she says it is like whipped cream. I am a little skeptical, but I try it and it seems good.

I always bring knitting with me, although it turns out to be unknitting in the end.  I usually have to undo much of what I have done on my chemo days because I have lost stitches or mixed up the pattern.  Lenore is also a knitter and likes to check in on what I doing.  Maybe I should bring her some yarn some time.

I get all my chemo, am hooked up to my pump and sent on my way.  We get home by two o'clock, surprisingly early after the later start.

Steve has a peace rally to cover downtown, and then a rally to impeach Obama at the state house.  He leaves shortly after we get home, so Ayla comes over to keep me company tonight.

We share some delicious black bean soup, salad, olive bread and brownies that Cynthia has brought by for me.  I am so lucky to have her feed my spirit on Sunday, and then feed my rumbly tumbly on this chemo day.  And the food is as thoughtful and filling as her sermon!

Ayla and I decide to go shopping to get the components for the Cancergirl and Radioactiveman costumes.  Since there has only been one comic so far, so I decide to take matters into my own hands. I can not draw, but I can direct a camera shoot. We will make a fumetti, an Italian style comic made using photographs.  I am going to try and find colorful clothing modeled after those Kaileigh used in her comic strip.

We stop at Savers first, where I find a purple dress for Cancer Girl, and some blue shorts for Radioactiveman.  I also find a ruffled dress I like.  I think the ruffles will cover my belly bump nicely.  I buy it even though I don't really need any more dresses.

From there we continue on to Target.  We still need turquoise leggings for me, a green shirt and leggings or sweatpants for Steven.  It is here that I realize how dangerous it is to shop on chemo.  By the time we arrive at the register, I have picked up so many extra items.  They are things I will need eventually, but not things I need now. I have found another pair of shorts for Steven, with stars all over them.  Very super hero.  There is also a green tee shirt that matches the intensity of the one Kaileigh has drawn.  Then there are some Christmas gifts and gifts for birthdays that are coming up, along with other various things.   I laugh at my shopping haul when I see it on the conveyor and buy it all anyway.

We get home late, but I still manage to do a blog post.  By the time I change my bag and get to bed it is after midnight.

Thinking about my side effects today, I realize I am a bit of a mess.  Weepy eyes, hoarse voice,
forgetfulness, and super chatty.  It is like I am drunk!

When I am thinking about my side effects today, I realize I am quite an interesting mess.  My voice is hoarse, my eyes are teary, I am forgetful and chatty.  Sounds like I am drunk, for sure.

Friday, September 26, 2014

August 28, 2014

I sleep late after getting up at four yesterday morning.  Today I am up at six, and have a child coming at seven.

This is a transition week for daycare.  Some children have started school, some are still waiting for school to begin next week. We have a wide range of ages this week, from almost two years to ten years.

My first arrival is one of the older children, so we play games and I knit until more friends arrive.  We make cupcakes to celebrate the birthday of one of our friends, and make cards to send to another friend who has moved away and will be celebrating her birthday in Australia.

Steve helps us go for a walk today, since we have such a wide range of children that move at different speeds.

Brett stops by with a kale salad for us.  I am a little afraid of the kale, since the last time Steve made it for me I had a bad weekend, but it smells really good.  I eat it and hope for the best.

I go to visit my Dad this evening, and he is in good spirits.  He is definitely more upbeat than he was on Tuesday.  The room he has is at the end of the hall, it is spacious and has one wall of windows.  This lets in a lot of light, and looks out on some beautiful green trees and then the new highway.  It is not a bad sight.  If you tire of looking at the trees, you can watch the traffic on the highway.  Sara and I ask him how he lucked out and got such a cushy room.

My Dad is not a very talkative person, so passing time in the hospital is sometimes very quiet.  We watch television together and comment about what is going on in the world usually.  I tell him any news I have from my family, but there is nothing that we can have a lengthy conversation about. This evening he is having trouble with his cell phone though, so we spend some time trying to figure out if it works in the hospital.  I call him, and he calls me.  We get it figured out.  As I watch him try to dial his phone, I realize it is difficult for him.  His fingers are so wide, and the numbers on the phone are so small.  He doesn't use it much, but it seems hard to control.  I ask him if he wants a different phone, but he says it is the hospital that is making his phone not work, not his trouble dialing.

I don't have time to go to stained glass after visiting my Dad.  Instead I go to pick up Alex from Filipa's house.  We stop on the way home to get some ice cream.  Tomorrow is chemo day.

Thursday, September 25, 2014

Monday, August 25

Steven and I go to see the nutritionist first thing this morning.   He has lost a few pounds since our last visit, and has been keeping track of the number of steps he takes in a day.  He usually exceeds the ten thousand step goal.  We get more meal tips and Steve is to start a food diary, to track what he has been eating. 

Once we get back to the house, it is time to take my little ones for a walk.  We head over to the boulevard to see if the mourning doves are still in their nest, but find they have left.

Sara gets a call from my Dad, she needs to bring him to Miriam to get his port flushed.  He needs to have this done every six weeks or so, to keep the line that he receives his dialysis treatment through clear. This takes a few hours, and he calls again when he is done.  She goes to pick him up and bring him home. There are only a few children today, so she doesn't need to come back.

It is a busy night at my house, Steve goes to a Gaza forum at the Barrington Library, I have a Happiness gathering to go to.  My group talks about going line dancing, a new activity for some of us.  It is on a Thursday night though, so I don't think I will join them.

Tuesday, August 26

Last night my Dad fainted at my sister Sara's house, where he lives.  He hit his head on the floor, and when he came to, he was dazed.  She called the rescue and was at the hospital with him until four thirty in the morning.  I didn't know that she had been up all night when she met us at the playground later in the morning.

Today we put all of the wishes back into the fountain, and added a few of our own. (Read A Playground Adventure to find out more!)

Stopped by the Jane Brown wing of RI Hospital in the evening to visit my Dad.  It makes my sister and I nervous that he is put in this wing of the hospital.  Last year, he had a terrible experience here where he lost the vision in one eye.  It seems like the staff might be different but Sara is keeping an eye on who cares for him.  He has already gotten into trouble because he won't stay in bed and wait for assistance to go to the bathroom.  He insists that he can make it there on his own, but he is definitely a fall risk.

Went to knitting after my visit.  When I get home, I eat a whole pint of mint chocolate chip ice cream.  I didn't mean to but I did.  Thanks Brett!

Wednesday, August 27th

I get up at four again, even though I went to bed late last night.  I was wide awake with no sign that I would be going back to sleep.  I got up, got dressed and managed to make it around the boulevard twice!

I am feeling very well these days, energized by the thought of getting stronger.  I want to try running a little.  I had been unhappily running for quite a while, and I wonder if the cancer was making me feel that way.  It is something I will think about for a bit before trying.

Over the weekend, I don't think I drank enough water, and I want to be sure to be hydrated for chemo. I manage to drink nine ounces before the morning is through.  The combination of warm weather and bike ride make it easier for me to drink.

Although I awoke so early, I panicked when I was in the shower and realized I should be on school time.  There are children that come earlier during the school year than they do in the summer, and I need to be set to go by seven thirty.  I rush to get ready, and am relieved that my first child doesn't come until eight.

My Dad is still in the hospital, but since I have a knitting night at my house this evening, I don't have time to visit him. I'll stop by to see him tomorrow.

Wednesday, September 24, 2014

Sunday, August 24

This morning one of my friends and fellow Prucom member, Cynthia, is doing the sermon at church.  When I go in the door, I am given an order of service and a slip of paper that say sensuality on it.  During the service, we are asked to think about the word written on our slip of paper, and how it might be connected to ourselves.  I think it is very curious that I have pulled this particular piece of paper out of a pile of many.  It is definitely something for me to think about, given my current state of being.

One of the things I love about the summer services is when we have people from our congregation give us a sermon.  It is an opportunity to see people in a way they are not often seen.  They have such interesting things to talk about, fascinating lives, and I think they are extremely brave.  To stand in front of people who see you often and bare your soul in this way is something that takes more courage than I know.

Cynthia's  sermon is very powerful, touching on personal points many people can relate to.  One of the most amazing things she shared with us was an obituary she wrote for herself, reflecting what she would like to be remembered for after she is gone.   There are plenty of moist eyes when the service is over.  Cynthia has touched many people.

I mean to leave church early, but as often happens, I get into conversations with people and leave at the very last moment I can before the next thing I have to do begins.

One of my oldest friends is coming by to meet me after church. It is Alice, who I met in junior high school forty years ago. She moved to Maine some time ago, and I haven't seen her in years. We had reconnected and been writing faithfully back and forth for a time over a year ago, but things got busy, and time to harder to find.  I am really looking forward to seeing her.

Since I have spent so much time at church my house is kind of messy when she arrives.  I have learned to not worry so much about the state of my house when people are visiting, I do what I can, and hope they won't mind.

When Alice gets out of her car, she is near tears.  We hug for a long time, and apologize to each other for the absence.  She is relieved to see that I am doing well.  I am just happy she has come to visit me.  There are gifts from her farm, tomatoes and cucumbers she has grown, honey she harvested from her bees, and jam she has made.  There is also a quilt her sister has made, green and blue and beautiful.

We have a nice lunch together, catching up on so many things. Alice offers to take me anywhere I might need to go, but instead we go for a walk in Swan Point Cemetery.  We look at the trees and she tells me about many of them. We both learn a few new trees from the name plates posted on the trunks of some of them.  When we get back to my house, we continue to talk until she needs to leave.  She has been in town for her father's ninety second birthday, and needs to get back.  We start to say goodbye, but talk a while longer.  Finally, she really needs to be on her way, and I watch as she drives off.  It has been a relaxing, beautiful day, that passed by much too quickly.

Tuesday, September 23, 2014

Going Back a Few Days...

I wrote this on Thursday August 21st, saved it and forgot to post it. 

I am awake at 4 am, my body buzzing with electric energy.  This seems to happen on the fourth day after chemo, so it must be the cause.  I try to relax and go to back to sleep, but I know this is not going to happen.  By 4:30 I am out of bed.  As I throw back the covers, I catch a faint whiff of what is now becoming a familiar scent.  I used to think it was my ostomy bag, but now I believe it is the way the chemo smells while it is working it's way out of my body.  I also think  had this smell when I was in the hospital, before I had chemo.  It is a sharp metallic smell, and to me, unpleasant.  Knowing that I smelled this way in the hospital I wonder if it is what healing smells like, or maybe it is the smell of cancer.  It is not fresh and clean, like a newborn baby, it is not like garlic breath, or a nervous stomach.  The closest thing I can think of is the heavy odor in the air after a car goes by that is not quite running properly. Maybe the it is burning oil, or an aging engine. I don't don't know enough about cars to say, but I have always imagined it is caused by all the metal parts rubbing together in some way they would not if all of the fluids in the car were flowing properly.  It is funny that this is the thing I have identified it with, a sick car.

When I came home from the hospital, I imagined it was the anesthesia leaching out of my body.  Could it be this is how a body smells when it is trying to transfer foreign chemicals through the pores? At first I thought I had this strange smell all of the time, but now I am seeing that there is a pattern to when I smell this way.  It seems to be most intense on the third and fourth day after I get disconnected, and then it fades as the week goes on.

My sniffer has not been as sensitive as it can be, this I attribute to the chemo for sure.  The ability to taste is affected, so surely your sense of smell is affected as well.  I need to concentrate and breathe in deep to smell things that I would normally just smell.  This can be a mixed blessing.  Food may not be as enticing and I am missing the sweet smells of summer.  I can't always smell a diaper in need of changing, which these days, I often just attribute it to myself.  I guess there is a directionality to scent that I am missing.  I never thought sense of smell could effect your sense of direction, but why would it occur to someone until it is not working properly?  Maybe subconsciously, when we smell something familiar, it pulls us toward where we need or want to be.  The faint smell of coffee in the air, and we can find a Dunkin Donuts, or a Seven Stars, the smell of soil helps us find an open space.  These are things we don't notice so much when we rely on all of our senses working together.

Monday, September 22, 2014

Friday, August 22

Today we are celebrating a birthday at daycare, so we make cupcakes of the birthday girls choice.  Chocolate with purple frosting!

While out for our walk, we watched an orange cat chase a squirrel up at tree.  After getting bored waiting for the squirrel to continue in the game of chase, the cat jumps to the roof of the house beside the tree.  We watch as he inspects the edges of the roof, and then starts looking in the windows of the house.  He has become a peeping tom cat! We all think this is very funny and have a good laugh.  We watch him for quite a while before he becomes bored, jumps to another tree and climbs down backwards!  This is a very exciting morning.

After lunch, we frost our cupcakes, and each get a candle in the middle of our cakes.  We sing "Happy Birthday to You," and make some wishes.  Life is good.

After I take Allie driving, I am hungry, so I call Steve to meet me at The Ivy Tavern to split a gigantic order of fish and chips with a salad.  I need to get my grocery shopping done this evening, because I have a busy weekend coming up, and this will be the best time to eat.

Saturday, August 23

Allie and I go driving on I95 this morning.  There is more traffic than I expect at seven o'clock, but she does great.  We do small loops at first to get the hang of entering and exiting the highway, building and maintaining speed.  She works her way up to going to East Providence, and we drive to her school.   We get back in time for me to make it to my hair appointment.

I love getting my hair cut.  It is the opportunity to have my hair washed by gentle, kind hands.  I love the way the water is warmed up to just the right temperature and the thorough rinsing your hair gets from the sprayer, the way no shower nozzle can.  After that I get sit for an hour and talk to Leslie, who has been cutting my hair for many years.

Today, as I am sitting talking, I think I smell something strange.  It can't possibly be me, I assure myself, I have only been sitting here in this chair, barely even moving.  When I get up to pay, I get that creeping sensation.  When I get out to my friend Brett's car, I sit down and check myself, horrified at what I find.  Another blow out!  How is this happening?  I look around the car to see what I can use to keep anything from happening while I am driving.  I didn't even think of bringing my "knitting" bag today.  It didn't even enter my mind.  I can not find a thing to help with my predicament.  No napkins, no tissues, nothing.  I place the seat belt low across my hips and gently place my shirt around my belly, so I don't ruin it.  It is one of my special fox shirts that I love.

As I drive home, the firefighters are out collecting for the Labor Day telethon.  I wish they knew how to read a calendar.  Labor Day is still a week away.  I contemplate flashing my belly at them, but decide to keep it to myself.  No need to be gross.

I manage to make it home without making a mess of anything.  I run into the house and up the stairs, like a teenager in a hurry to avoid a parent.  Steven calls out to me, but I just run into the bathroom and close the door.  He comes to see what the problem is, and I tell him I just need to change in a tone that is pretty surly.  As I am changing, he goes back to his computer and looks up ostomy blow outs.  He tells me it is a very common complaint among ostomy bag patients.  It just happens.  As if this is supposed to help ME.  I do not really care about that or anyone else right now, I just want this to stop happening to me.  I do not say this out loud, but something in my look tells him it is time to leave me alone.  I clean up, change up, and get over it as well as I can.

We are supposed to be at a picnic at Colt State Park by noontime, and I want to stop in a yarn store in Warren.  We are supposed to bring some food, and I forgot to get burgers and rolls, so we stop at Whole Foods on the way.

I need to go to the yarn store so I can get some special yarn for a baby sweater I want to make.  Bella Yarns has been open for a few years, but I never seem to get over to Warren to stop in.  It is a beautiful shop, and I would love to browse for a while, but Steve is waiting for me in the car, so I get down to business.  As I check out, the woman at the register asks about my tattoo.  I know if I tell  her the real story I will not get out of the store quickly, but I tell her anyway.  It turns out she has her own cancer story to tell.  She calls it the "C" word.

We get to the park where the Humanists of Rhode Island are having their picnic and have a nice time with some old friends and meet new people too.  I am very worried about my bag, it is hard not to be.  I stay for a while, but not too long. I need to pick Alex up at Whole Foods, and do my WFM grocery shopping.

As much as I am worried, about my bag, the rest of the day passes without any surprises.  Well, not bag surprises anyway.  When I start to work on my blog, my screen does this weird thing.  Most of it turns black, except for a shape that looks like a torch or maybe a chalice.  It is very weird.  I call Alex from his room to get his take on this situation, when the whole screen goes dark.  My monitor has crashed.

Sunday, September 21, 2014

Tuesday, August 19, 2014

When I wake up my hands are feeling less itchy today, but my feet are starting to itch.  Is this for real, or is it just in my head?  I will just have to see what the day brings.

This evening my knitting friends presented me with the afghan they have been working on for me.  It is beautiful.  It is shades of green, with crocheted flowers sprinkled across it.  It is a meadow of love knitted for me by my friends.  What could be better for keeping away the chill of the day?

Wednesday, August 20

No more itching today, thankfully.  And less finger tingles.  I am getting better at predicting when my fingers will get cold and remembering to put on my gloves. 

Alex tells me he has decided to go back to UMass for the winter semester, and has started doing what he needs to do to make this happen.  I am surprised, because this is very different from the last plan that I had heard, but happy that he is making such mature decisions for the course of his life.   Working at Whole Foods has been fine, he tells me, but most of the people he talks to who work there wish they had continued on with their schooling.  He thinks this is good advice. I do too.

Thursday August 21

I wake up with that electric feeling again.  I am starting to see a pattern here.  Every Thursday after chemo, I have this feeling.  It is helpful to know this, because now I can anticipate it and be ready.

I go for a bike ride, this seems to help calm my body down.  I make it around the boulevard one and a half times today.

Around mid day, I start to feel very tired, but get through.

Jane stops by after nap time. She has brought along her sewing machine so she can finish the bag covers she is making for me.  Jane has also brought along her daughter for a visit.  She used to come to my house when she was little.  Now, she is taller than her mom!  We have a short visit before some of her friends come to pick her up for a trip to the mall.

Jane stays and works on fitting the covers for my ostomy bags.  The covers are so pretty, much nicer than the flesh colored bags that hang from my belly.  Now I have four different designs to choose from, colorful and fun.  They will make me feel much better about wearing a tee shirt or any shirt for that matter.  I won't have to wear a dress all the time.

Jane tells me she might like to come to knitting at my church sometime, but is not sure that she can learn to knit.  I assure her we can teach her, but let her know that we don't mind if people come with other crafts either.  She can bring her machine and quilt if she likes.  Some of our knitters might also like to quilt too!

Kaileigh wants to visit the RISD museum this evening for gallery night.  There is a circus theme, and there will be posters on display.  My whole family has an appreciation for circus art, after seeing an exhibit at a Circus Museum in Wisconsin we stopped at on a trip to bring Kaileigh to college in Portland Oregon.  I take the night off once again from stained glass, to go.  It was fun to be with Kaileigh and Steven, but the exhibit is not as interesting as we had hoped.  There is a circus act going on outside that is fun though, lots of children and adults enjoying juggling, unicycle and balancing acts, ostrich stilt walking.  This is certainly worth more than the price of admission, which tonight is free!

We call Ayla to see if she wants to meet us for ice cream at the East Side Creamery on Ives St, just a short walk from her apartment.  She and Chauncey come over to say hello, even though they have just had a dinner with freinds, along with dessert.  I get a cone, and am disappointed to find that I still have throat tingles.

(Note:  there should be some beautiful photographs here, but Radioactive man is out trying to change the climate tonight, and can't post them for me.  Look for them later in the week!)

Sunday, September 14, 2014

A Playground Adventure

It is a warm and sunny day at the playground.  The fountain is flowing, and we sit on the edge, dangling our feet in the cool water.  There are seven of us, ranging in ages from one and a half up to six years old. We love to visit the fountain all year round, but in the summer it is more fun.  We throw pennies in the water and make wishes, and if it is warm enough outside, we get to take off our shoes and get our feet wet.  Kathy and Sara don't let us take our shoes off at the playground much, so this makes us all very happy.

Suddenly from the east, a whole bunch of older children come running toward us. There are ten of them, all different ages, but older than us. Those kids, they jump right into the water, even though we know that there are signs around the fountain that say not to do this.  They splash and play, and touch all of the pipes that make the water fountain work.  They cover the water coming out of one pipe and the water from the next pipe shoots out higher.  It looks like fun, but we know they are not supposed to be doing that.  We sit on the edge and watch, amazed and confused. 

There are these two boys who sometimes play with us when we are here.  There father sits in his car on the side of the playground and watches as they play.  We have never met him, but sometimes the boys run to the car to tell him things.  Sometimes the car is nearby, sometimes it is all the way across the park.    They have jumped into the fountain too, and are splashing about.  One of the boys finds a bowl that is floating in the water.  Joey is happy, that bowl has been bothering him.  It doesn't belong in the fountain, but it was too far away for us to reach it.  They start collecting pennies from the floor of the fountain, pennies we have just made wishes with.  This is really bad.  If those boys take those pennies, people won't get their wishes. We won't get our wishes.

Before too long, the lemonade man comes by.  We climb down from the wall of the fountain and run toward the edge of the park.  We find a place in the shade of a tree, while Kathy goes to get our lemonade.  We get to choose the kind we want, lemon, or red.  Most of us choose red, which today is watermelon.

As Kathy is getting ready to order our lemonade, the two boys that were collecting our pennies run up to the truck.  Their bowl is filled with money.  They have taken all of the wishes out of the fountain and about to spend them on lemonade!  We are amazed.  Why would someone do this?  Kathy talks to them and asks them where they found the money, although we all know.  They happily tell her it came from the fountain.  She looks at them with wide eyes.  "You stole all those wishes out of the fountain?"she says.  "That is not right."

"We are going to buy lemonade," one of the boys announces.  "The man will count the money for us."
"But those are people's wishes!"  Kathy tells them.  

"We are going to get lemonade with them!"  the tall one says proudly.

"How about if I make a trade for those wishes?" Kathy asks.  She buys them each a lemonade and takes the bowl.  We settle into the grass to enjoy our lemonade, and to count how many wishes the boys stole.  It turns out to be two hundred and thirty five.  That is a lot of wishes! 

We watch as the kids continue to splash in the fountain.  We are hoping they will leave, so we can put the wishes back where they belong.  We know that if we put them back in now, they will just take them out again.  We finish but the kids are still there.  Kathy puts the money in our toy bag, and promises we can come back another day to return the wishes.  We know this is an important job, and can't wait to return to do it.

Saturday, September 13, 2014

Sunday, August 17, 2014

Even though we didn't get home until early this morning, I wake at seven.  As I lay in bed thinking about my day, Kaileigh wakes up and we talk for a while before I need to get up and get ready for church.

Kaileigh is heading back to her apartment this morning, but she gives me a ride over to Brett's house to pick up her car.  Brett is away for a few weeks, so she has been letting our friend Anna and I use her car.

Childcare is all set, so I go to the service and sit with friends Rita and Domenic.  We are all Sunday school teachers during the school year, so it feels very special to be able to sit together and enjoy this time together.

During the Joys and Sorrows part of the service, where we are invited to share milestones in our lives, I think about getting up to say thank you to the congregation for the peace flags they have made for me.  I am not quite sure what to say, so I stay in my pew and offer up a silent thank you.  There are so many things to be thankful for in our congregation, so many kind words and deeds that are done.  I try to thank people personally, Anne for all her lovely cards and kind gifts she sends or gives me each week, Lynda,  Merritt, Jim and Peter, who stop me and offer words of support.  People I didn't know before I started writing about my experiences, who introduce themselves to me and share.  It is such a beautiful gift to my soul.

Today is food shuttle day.  This is done once a month before our Monday Food Pantry happens in the atrium of the church.  The congregation pitches in and helps shuttle items from the basement of the church to a room off of the atrium for storage until tomorrow afternoon, when the items will be distributed.  The shuttle is a way for people who might not be able to make it to the distribution to lend a hand.  I go down to get a few cases of food, and people are surprised to see me.  I carry little kids around on a regular basis, I can easily handle a few cases of food.

I intend to go back for more items, but get into conversations with friends and the job gets completed without my help.  I don't think anyone minds.

I get home just before Sandy, comes to unhook me from my chemo.  For the past two days I have had itchy hands, which I assume are connected to my treatment.  Sandy says she has heard some people complain of this as a side effect, and recommends benydryl if it persists.  It seems to be going away, but I am hoping it doesn't continue to happen with further treatments.  I have found relief by rubbing my hands,or squeezing things.  A steering wheel works very well for this. If it spreads to my feet, it will drive me insane for sure.  Thank goodness it has not reached that point.

Allie stops by to pick me up so we can go driving, she is doing well, she just needs more practice.

On the way home from driving, I stop by Stock to buy some gifts for my sister and law and my niece for their birthdays.  It is a cool, funky cooking store on Hope Street, and I am sure I can find some nice gifts there.  Of course with any gift giving occasion, Frog and Toad is a necessary stop as well, and I find little add ons for the gifts.   I am going to go over to their house this afternoon to celebrate their birthdays together, something we usually do as a big affair, but my niece is turning sixteen and didn't want to do anything big. Renee, my sister in law is doing this for me, after I said that I would be coming over anyway.   My mother in law, Ed and Ayla will join us also.  We have a lovely dinner, something we don't do together often enough.   Steve is missed at our gathering, but he is on his way home and will be back soon.

Monday, August 18, 2014

It is a quiet day, a nice way to start the week after a busy weekend.  Some older friends come to join us for part of the day, and take a candy walk with us.  We stop by the tree on the boulevard to see if the baby mourning doves have hatched, and are delighted to see that they have.  There are two babies and their momma snuggled in their nest in a magnolia tree.

Kaileigh and Josh stop by for dinner.  They are in the city to drop off a kayak to Ayla and Chauncey to store and use.  They don't have a good place to keep it at their new place, and Ayla does, so it works out well for everyone.  And we are delighted to have them stop over for dinner.

Friday, September 12, 2014

A New York Adventure!

I didn't sleep well last night.  I am not sure if it is from the chemo, or if it is our impending trip to NYC that has me up so early.  I have enough time to stretch, go for a bike ride, pack, wake up Kaileigh and get ready to go.  We are on the road to pick up Ayla by six, already running late since I had told her we would be there by six.   I can't remember which part of the street her new apartment is on, since I have only driven by it.  I blame it on the chemo, but maybe I wasn't really paying attention when we drove by it before.  I don't even know the house number.  I feel like a really bad mother.  We call her to find out where it is.

We pick up Ayla and Chauncey and with Kaileigh driving, head toward the Big Apple.  Chauncey has never spent any time in NYC before, so we have let him choose what we should do today.  Our first stop; the Statue of Liberty.  We sail along and make it there in three hours.  We are able to park at the Department of Homeland Security lot with Chauncey's handicapped certificate.  It is just a short walk to the ferry that will take us to Liberty Island.

While we are purchasing tickets, we find out what a sweet trip this will be.  Because Chauncey is on crutches, we get to the front of every line.  For tickets, we are our own line.  They escort us to the front of the security line, and the front of the ferry line.  We sit near the door, and watch everyone board the boat.  It is great fun to see people lurch to the left as the boat dips and sways while they are entering.  It is like they are all walking drunk!

It is a beautiful sunny day, but there is a strong breeze on the ferry, and of course I have left my gloves in the car.  Kaileigh holds my hands to warm them so they won't be so tingly.

On the ferry
A view of the city from Liberty Island

tickets are all sold out for going inside the statue today, so we walk around Liberty Island, enjoying the sights and the beautiful day.  It is fun to see so many people from all over the world enjoying the statue. 

We get back on the ferry and head to Ellis Island.  I am a little disappointed with what we find here.  We had come when the kids were little, and they had such interesting artifacts on display, things families had brought over from their country of origin.  This time there was a lot of history, much of it nothing to be proud of as Americans.  I suppose it is important immigration information, but much of it was about how badly immigrants were treated once they reached New York.  If I were a person of Asian descent, I would come out of that exhibit feeling very angry at this country.  I know that we didn't do things right for many people, but I felt that the whole exhibit was kind of down on the country.  I thought it could have been a little more balanced than it was.  And the kids stuff was pretty lame.

Even back then they had graffiti

After Ellis Island, we jumped back on the ferry.  I was relieved to get back to Homeland Security and find that the car was still there.  I was a little afraid, that even with permission, we might get ticketed or towed, but all was good.

The drive to the other side of the city, to Central Park West, was easy and trouble free with the help of the GPS.  We found a parking lot two doors down from the Society for Ethical Culture Building, which was perfect.  At the end of the day when we are all tired, we won't have far to walk.

With the help of Yelp! we find a well recommended food vendor not far from where we are.  I get chicken and rice with a salad for five dollars!  Such a deal.  It was very good too.  We sit next to  a Waffle and Dinges cart, which smells heavenly.  By the time we are all done with our lunch, we have no room for trying out dinges though.

Chauncey wants to see the piano from "Big" at FAO Schwarz.  We walk a long way for someone on crutches to find it.  We even had to stop and do a repair along the way, but Chauncey was so excited, he didn't mind the distance.  At this point, I think he started to get blisters on his hands, but he was undeterred.

In the middle of a street fair
Once we arrive at the huge toy store, I realize that it is just about time for Steven to meet us at the Ethical Culture building.  I hustle back, finding and shorter way along the side of Central Park.  I wait on a bench across the street until I see him, and try to get his attention by calling him.  He doesn't hear, so I thy to quickly follow him in the building.  Once I get in the door, I have no clue where he may have gone.  There are five floors, so I start looking.  The second and third lead to a large auditorium, so those floors are easy.  The fourth is a corridor with many doors, but I don't see any sign of him there, just some caterers setting up for the dinner to be served at six.  The fifth is another floor filled with doors, but just as I get on it, Steve is coming out of one of the doors.  He is so happy to see me!  He introduces me to his classmates and mentors, and we have a couple of minutes to catch up.  I give him his new phone so we can now have contact.  Even though he knew it was a new phone, he didn't know it was going to be a smart phone and is very touched and surprised.  He needs to work on the graduation ceremony with his classmates, so I head to the toy store to find my crew, and lead them back.  It turns out they are on their way to Times Square.  I change route, and make it there before them, so I call to see where they are.  They have found a street fair on their way and have stopped to get a cronut, which is a delicious cross between a croissant and a doughnut.  We make it to Times Square, but decide not to go too far in.  We still have to get back to the West End of Central Park, which is a fair distance away.

We are happy to snap photos of the huge electronic billboards and visit the Hershey store and the M&M store that are nearby.  They are both packed with tourists, like us, and it is just enough of an experience to leave us content with what we have seen.
Times Square!

Ayla waves her arm and flags down a taxi like a pro, and we end up with a limo that will take us to our destination for twenty bucks.  I think we have gotten a deal.  The driver is really nice, and impressed that we are up from RI.  He says he doesn't meet many people from there.  He could be pulling our leg about this, but he seems sincere.  He wants to know about the new marijuana laws, which none of us know too much about.

He drops us off right in front of the Ethical Culture building, and we take the elevator to the basement for the bathrooms, and then up to the forth floor for the dinner and ceremony.  The food looks good, but I am still feeling stuffed from lunch, so I wait until dessert to eat.  There is always room for cake! I do get a coke, and forget to ask for it warm, so it has ice cubes in it.  I am not thinking about the chemo on my back at all, and I take a big sip.  I am surprised at its lack of taste (a side effect) and then shocked when I swollow and think there is something lumpy in my drink.  It is just the neuropathy.  I have completely forgotten about it.  As annoying as this is, I take it as a good sign.  I have forgotten about the pack on my back!

Steve gives his speech

Kaileigh, Ayla, Chauncey and I all get introduced to Steve's classmates, friends, mentors and administrators.  He is so thrilled to have us here.  He didn't know that I was going to make it, let alone the girls and Chauncey.  Alex would have come too, but he had to work.

Passing the torch to the new class.
The ceremony is excellent.  Each of Steve's classmates give a short summary of what they got from the class, and how they are going to go out into the world and use what they have learned.  It is inspiring.

Dr. Felix Adler, founder of Ethical Culture

A statue in the auditorium

Later, we get to hang out on a NYC rooftop, at the very top of the building where they have a playground for the preschool that is located there.  The view of the city at twilight is amazing.  We are very lucky to see the city from this point of view, looking East over Central Park, with no obstructions.  I think this is a view usually only seen in movies or by those with a lot more money than many of us will ever see in our lifetime. 
NYC Skyline from Ethical Culture rooftop

Before we head back to RI, Chauncey would like to take a carriage ride through Central Park.  We find a lovely carriage, with a very nice Hungarian driver to take us.  He tells us bits of trivia as we pass points of interest.  It is the perfect ride for us.

As we head back to the car, we see some men launching some lights into the air with sling shots.  It turns out to be small helicopter like objects with leds attached to them.  They are mesmerizing.  Ayla and Chauncey each purchase on, and of course after I leave, I wish I had too.  They are so cool looking.

It has been a beautiful day in the city.

We head home, and Kaileigh is not feeling too tired, so she drives.  I nap in the front seat next to her.  Once we are out of New York, she starts to feeling sleepy, so  I take over for her.
As I  drive, I keep up with traffic, especially this one white car.  At some point at about exit 50, or about halfway through the state, I wonder what has happened to that car.  I realize that I am going down hill, and quite a bit over the speed limit, when bright flashing lights appear out of the darkness.  I am being pulled over for speeding.  I wait on the side of the road for the officer to come to the car, and realize that my handbag is in the trunk.  I put it there so I could better fit my backpack and all of my people without crowding anyone out.

The officer cautiously approaches the car on the passenger side, and I feel badly for him.  He has no idea who he has stopped.  For all he knows, we could be drunk or high gun wielding maniacs from Massachusetts.

I tell him I need to get my handbag out of the trunk, which certainly could be perceived as shady.  As I get out of the car, I forget to grab my chemo back pack, and remember when I get a little tug on my port.  I raise my hands up and carefully say, I need to grab by chemo bag from the car.  This is yet another move that could be seen as shady.  With slow, steady movements, I grab the bag, walk to the trunk and open it.  In there, along with my bag, are Chauncey's crutches.  At this point I hope the officer is feeling a little less threatened.  I go to the passenger side of the car to get the registration for which is in Josh's name, who is not in the car. The car is registered in Massachussets, and I have a Rhode Island drivers license.  The insurance is updated but the card hasn't come in the mail yet, since they have just moved, so that information is not right.  I think all of this is adding up to one well deserved ticket.

The officer instructs me to get back in my car, so I do.  I look in the rear view mirror, and he seems to be just sitting and looking out the window. I wonder what he is thinking.  After a few minutes, he comes over to the driver side window, and tells me to take it easy.  The speed limit on that stretch of highway is only fifty five.  I thank him and drive off, grateful that he has not given me a well deserved ticket.  I think it was the chemo that did it.

We get back to Providence and drop off Ayla and Chauncey.  It is almost one, and I am exhausted!

Thursday, September 11, 2014

Friday, August 15, 2014

Kaileigh is coming with me to chemo today.  She leaves her apartment in Somerville early, but hits a traffic jam.  I am worried that she might not make it on time, so I head over to the Miriam on foot. Just as I turn the corner onto Hope Street, she drives by me and stops on the opposite side of the street to pick me up.  We make it to the hospital in plenty of time.

There are many people in the waiting room when I arrive, but when I go to the chemo unit, there is hardly anyone there.  Carolyn is my nurse today, since Faye is on vacation.  She takes my blood for testing and it comes back quickly today. Everything looks good.  Another nurse, Jen, comes in to take my vitals.  Since Dr. Safran is on vacation I won't be seeing him today, so I don't have to leave my chair except for bathroom breaks.

Carolyn and Me!

Jen asks about my tattoo.  She really likes it and the story of its origin.  Carolyn asks about it today too. They love that my daughter designed it and that both my daughters and a few friends also have fox tattoos.

Claire comes again to give me a Reiki treatment.  I am surprised because I thought she would be away today. She starts, and I don't feel anxious at all this time.

I remembered to bring snacks for Kaileigh today, so she doesn't need to leave to get lunch.  We talk through the whole session, and can't believe it when Carolyn tells me I am ready to be hooked up to my fluorouracil pump.

When I get home, there are five children at my house.  I sit and color with them and then play a couple of games of Uno.  Sara makes some popcorn for snack, and it smells so good.  Popcorn has always been one of my favorite snacks.  I haven't had any since my surgery, and I am a little nervous that it might bother me.  I decide that chemo weekend is not the best time to try new things out.

Ellen comes by with some delicious soup for Kaileigh and I to share for dinner.  It comes with some olive bread and fresh mozzarella and is warming and delicious.  I appreciate this, as it warms my whole being, right to the tips of my fingers!

Claudia stops by to bring me a gift from the congregation at 1st UU.  With the inspiration and guidance from our peace flag/Month of Peace mentor and founder, Ginny Fox, they have made me the most beautiful peace flags.  They are all different and colorful and made with love and care.  I am so touched by the number and the beauty of them all.  It is such a lovely gift. (A photo will be posted later...  check back!)

I walk up to Hope Street to go to the bank, and run into a former neighbor who is out walking her dog.  While we are catching up, one of my moms from a few years ago walks by looking for her daughter. We have a great catch up session in front of Olive Del Mondo.  This is one of the many wonderful things about my neighborhood.

Amy leaves to find her daughter, and returns with her so I can see how she has grown and say hello.  She is much taller than the last time I saw her, as beautiful as ever, and she is sporting a temporary fox tattoo to show support for me!  So cool.

Kaileigh and I go to the mall to check out smart phones.  She has been feeling like it would work better for her for a number of reasons, one being that  there is an app for the T she could get that would be helpful.  She chooses one, and I decide to get one for Steve as a graduation present.  Unfortunately it won't be such a big surprise, as his old phone gets turned off accidentally.  This leaves him with no way to contact us about where we should meet him, unless he uses his ipad.  He doesn't know this though, so I need to email him when I get home.

We are hoping to hit a few other stores before the mall closes, but our phone purchases take so long we close the mall down at the Verizon store.

My treatment today has made me foggy and slow headed, but I am aware of this and try to work my way through it by taking my time with things.  My fingers are more tingly, but it is cooler out today so that may be why.   I need to wear gloves home from my trip to Hope St. and at the mall. My stomach feels icky from the fluorouracil, but the psi bands seem to be keeping things under control.  I go to bed knowing that the sleep will help me feel better, and that tomorrow will be an exciting day.

Wednesday, September 10, 2014

August 14,2014

Trying to get things done before chemo tomorrow, washing walls and floors, cleaning out the fridge. These are all things other people would do for me if I asked them, but I am able to do them myself every other week, so it seems like it would be unfair to have someone else do it.

I make a smoothie for breakfast and think, I don't really like having smoothies this often.  I don't like making them or cleaning up the mess.  And they really aren't that good if you are out of bananas.

We take the kids to the playground today, and they are filming the new Woody Allen movie in the section of park that we usually walk in on.  It is a little strange for the kids, all these people in a place where we usually rule the grounds, but they do fine getting through the change of route and all the people milling around. Fortunately, the film crew is not interested in the playground or the fountain, the two places we love to play.  Some friends join us to play, and we have a great morning.  Just as we are walking by the filming area, they start yelling "rolling!"  We do our best to stay quiet as we walk on by.

When we arrive home, I find a beautiful dress hanging from the mail slot in my door.  It has to be from my friend Amy!  It is similar to one she gave me that wouldn't work because the way the neckline was shaped hit my port and made it uncomfortable.  It is similar to the other dress, but it is softer around the neck and misses the port. I love it.

I make waffles and maple syrup for lunch for lunch. Maple syrup, which is a demulcent food, helps things slide through your digestive system.  I serve this to the kids once a week because some of them won't eat fruit, and this helps their poop slide out a little easier.  For me, I believe this has helped alleviate the cramping I had been getting after chemo.  (Definition according to Wikipedia: A demulcent is an agent that forms a soothing film over a mucus membrane relieving minor pain and inflammation of the membrane.)

At naptime, one of the girls keeps trying to figure out where my port is.  I am wearing a dress that has a cowl neck, so there is fabric there that is hiding it.  I find it amusing that she is looking for it, poking with her fingers, but also a little amazing.  She isn't even two yet, and although I am sure she has seen it, she has never reached out to touch it.  Clearly, today she is curious about where it is now that she can't see it.  I guess I should hide it more often.

One of our new neighbors stops by to thank us for the cookies we left for her yesterday.  She brings us some biscotti and a sweet nut mixture.  The kids are excited because I forgot to buy nuts this week, and they have been asking for them. We eat them for snack.  They decided they don't like them, but I think they are yummy.

Our zinnia garden is in full bloom, well, at least some parts of it are.  Some of the plants that were planted after the fourth of July are just starting to get buds now.  Each of the children pick a few of their favorites to take home to their families, and we still have many blooms left to enjoy.

Alex and I enjoy Polly's lentil soup, even though she has tried to convince me that it is not a great batch.  I have my last ice cream sandwich until sometime mid week when my throat tingles fade away.

I decide to stay away from stained glass yet another week in order to get ready for chemo tomorrow.  I am hoping for a bike ride, a shower and to change the water in the fish tank before I go, so I need to get to bed early so I can wake up early.

Tuesday, September 9, 2014

August 13, 2014

Steven leaves for Rutgers University in New Jersey early this morning.  He is finishing the last segment of a course in Ethical Culture he has been working on for the last three years.  He will graduate on Saturday at the Society of Ethical Culture building in New York City.  We had been planning that I would go and stay in NYC with him for the weekend since January.  That was before chemo started happening.  I will have a treatment on Friday and need to be unhooked on Sunday, so it doesn't seem like I will be able to make it. This makes me sad.

When I get up, I start doing some heavy duty cleaning that I won't be able to do while my chemo wears off.  I scrub floors and bathrooms, it is like I have that nesting instinct you get when you are pregnant.

It is pouring rain today, so it is a baking day.  We make a sort of reverse chocolate chip cookie, chocolate cookies with vanilla M&M's.  We draw pictures and cards to leave along with cookies for the two new neighbors who have moved in on my street.  We will deliver them while we are out on our rain walk.  When we start out, it is only drizzling, but by the time we are finished, it is pouring!  We don't mind too much, since it is warm and we are all dressed in raincoats and boots.

I get a chance to talk to my friend Ayako about what it was like growing up in Japan in the shadow of our bombing of Hiroshima and Nagasaki.  She tells me the bombs were freeing in an odd way, because the people of Japan were living under an oppressive government at that time.  It definitely shaped the culture of the country, and made them adverse to war.  She shares with me some stories from her childhood, about school and Japanese culture.  I feel fortunate to have the opportunity to hear her stories.

Since it has been a busy day and I haven't started dinner yet, Alex takes me out to Hope St. Pizza.  We both get gyros and a salad.  It really hits the spot!  Just after we get home, my neighbor Polly brings over some lentil soup.  We will have it for dinner tomorrow night.

With chemo coming up on Friday, I am trying to figure out what I need to do to repeat the success of my last treatment, where I had little discomfort afterwards. I feel like I am planning a ritual: drink smoothies, eat waffles, be sure to drink ten glasses of water, sleep.

All of my bag problems seem to be under control today. New bags came in my delivery, that are good for one day since they are not drainable.  They seem like they will work well, except that I am gassy today and there is no way to let it out without changing the bag. Here we go again.

For some reason, I get my period this evening.  What?!  I haven't had it since this whole escapade started.  This could certainly explain the chocolate rampage I have been on for the last few days.

Ayla stops by to say hello and tells me she wouldn't mind driving me to New York on Saturday.  I ask Kaileigh, who is planning on coming to chemo with me on Friday, if she would like to come too.  She says yes. Suddenly, it looks like I will be able to go to Steven's graduation after all.

Monday, September 8, 2014

August 11, 2014

This day is known as Victory Day in Rhode Island, but I prefer to call it August holiday.  I don't know why we can't just acknowledge the fact that we like to have a day off in the middle of August, just because it is summer.  It seems silly to me.  In any case, I have the day off, and plan on enjoying it.  It has been a busy weekend, and I have so many things to catch up on around the house.

After an early morning bike ride, I work on the zinnia beds in front of my house.  Some of them are too close, others too far apart. I pull out plants that are too close together, and spread them around to fill in areas that need more.  These plants are past the seedling stage, and are fairly strong, so I am willing to take the chance on them surviving if I replant them with the help of a lot of water.  They wilt quickly once they are in the soil, but I know they will perk up.

I have been doing hot sweaty work this morning, so I need another shower.  Of course my bag has not been behaving, so I don't feel badly about changing that too.  Unfortunately, between the pancaking stools and the frequent removal of bags, the skin on my belly is starting to get irritated.  This means I need to apply a powder underneath the adhesive and the caulking, which seems counterintuitive when you are trying to get something to stay stuck.  I have seen photos of infected skin around stomas though, and I have no interest in gaining perspective on that problem.

I decide I will call the company which manufactures the bags I use to see if they can help me with my problem of bags that don't stay stuck.  Since it is Monday, and not a holiday anywhere else in the country, they should be fully staffed and knowledgeable.  I get through, but the representative I speak with does not seem very knowledgeable about how to deal with this problem.  She does offer to send me out some sample bags.  I guess this is better than nothing.

I decide to hang all of the cards I have been receiving from a long crocheted chain on my bedroom wall.  I end up needing two chains, which makes it look like a big happy smile.  I add an elephant garland that Kaileigh's friends, Ian and Anna sent me when I first went into the hospital.  I will wake up every morning to the love and good wishes of my friends and family. What better way to start a day!

August 12, 2014

My order arrives from Coloplast today.  I am relieved, since I was only down to a few bags.  This time I have intentionally over ordered.  I don't like having to worry about whether or not I will have enough to get me through to the next delivery.

Knitting tonight is quiet, just me and Linda.  We decide to do our yarn bombing on a lamp post in front of the church.  We stitch by lamplight, and nearly cover the whole post.  It is difficult to reach the upper part of the lamp, so she and her husband hold my bike steady so I can gain the height I need to reach it.  We are certainly a bad ass bunch of yarnffiti artists.

Sunday, September 7, 2014

A Morning at the Beach

I take this morning off from Sunday childcare at church, and Steven and I go to Horseneck beach with some friends.  I put on my bathing suit, jeans and a tee shirt.  I am not sure whether the wind or the water will affect my neuropathy, so I bring along an extra tee with long sleeves and a sweatshirt.

Just before we are about to get picked up, I empty my bag.  Some how while doing this, I manage to put my finger through the plastic and now need to change the whole bag.  This is very upsetting.
Steven send our friends off in search of coffee at Seven Stars bakery while I change it.  They arrive again to pick us up just as I have finished.

We get to the beach around eight, before they have started collecting the admission fee.  There are only a handful of other people here at this time, and the beach is freshly groomed and beautiful.  It is like a giant has used the beach as his personal zen garden.

The tide is going out, and we set our blankets down close to the shore. Valerie and I head down to the water with her boys and watch as they build rock walls to be knocked down by the waves and washed away.  They start skipping stones into the water, and Steven and Alex, their dad, join in.

Before long, we decide to go back to our blankets and have some breakfast.  I have done a rather lame job of packing for our feast, but Valerie has covered for me with delicious treats from the bakery.  I have a cinnamon bun, and Steve picks out a berry muffin.  Valerie has some bread with butter, and the boys have some bread, fruit and a cookie.  Alex is off, riding his bike on the beach, missing out on first picks. Breakfast is so delicious in flavor and mood.  We sit back, enjoy the sights and smells of the ocean while savoring our food and company.

Steve and I go back down to the water with one of the boys.  I get my feet wet, with no tingles.  I stick in my hands and seem to be okay.  I take off my jeans, but put on my sweat shirt.  There is a steady breeze blowing and I feel cool.  I have been contemplating getting wet.  I wade in, and there are a lot of rocks rolling back and forth in the water.  There is also a whole section of red sea weed.  Instead of going in, I decide to collect some quahog shells from the shoreline to paint during the week at daycare.  I also gather rocks to line our zinnia garden with.

When I return from collecting, our friends are all in the water.  Steven and I decide to take a walk along the beach, one of my favorite things to do at Horseneck.  There is a part of the beach, away from where the lifeguards are, away from the crowds, that is full of surprises.  Since it hasn't been as well traveled as the main section, there are washed up treasures to be found.  There are often seagulls guarding fish that have washed ashore or other mysterious edibles, pieces of driftwood, bits of rope, fishing net or line, gloves and other things that have found their way to the shore from the sea.

The best thing is the secret art gallery that patiently waits to be discovered.  Along the way, scattered at varying intervals, there are temporary installations, composed of shells, rocks, driftwood, seaweed and sand.  I discovered this treasure a few years ago, and have been delighted to find this natural museum recreated each summer since.

At first we find small works, sprinkled here and there, then come across the main attraction.  It is made of many quahog shells, rocks and driftwood.  After collecting shells myself along this beach, I am appreciative of the labor that went into gathering the materials before the art had even begun.

We turn around to head back to our blanket, and find Valerie and the boys walking toward us.  We show them the sculptures we have discovered.  One of my younger friends and I decide to repair one of the sculptures that was damaged by the earlier high tide. We gather dried sea weed and add our own flourishes.  When we are completely satisfied with our work, we head back to catch up with the rest of our party.

On our way, I an delighted to find one of my daycare families playing at the edge of the shore.  Soli and Lee are there with their children and friends, enjoying the morning at the beach.  I am amazed that we have managed to bump into each other, it is so rare on a quickly filling beach to see anyone you know.  We say hello and head on our way.  The beach is much more crowded now than when we left on our walk, and the tide has gone out quite a bit more, making it a challenge to find our blanket.

Having had our fill of the beauty and what was at the beginning the solitude of the beach, we pack up and head out.  It is a wonderful way to start the day, and nice to escape before the beach becomes too packed with people.

Having had the seal break on my bag for two days in a row, I am starting to get a sense of what it feels like at the beginning.  Although I had on my bathing suit, and my bag was held close to my body, I know the seal is not holding.  It started to work it's way loose at the beach, and by the time I arrive at home, the waste is working it's way toward the edge of the adhesive ring.  I needed to take a shower anyway, so this gives me an excuse to take the bag off and enjoy a shower plastic wrap free.  When I am applying my new bag, I decide to try using adhesive paste.  This is like caulking for your belly.  It is recommended if you have an uneven belly surface, to fill in gaps that might prevent a tight seal. I don't have this problem, but I am hoping the extra stickiness will help my bag stay put.

I intend to get ahead on my blog today, but instead work on my ostomy bag order.  I am trying to figure out the solution to my lack of adhesion problem.

As I am getting ready to go to a graduation party, I am worried about my bag again.  It is becoming an obsession. I find some c-shaped seals that are meant to go around the bag during exercise, and put them on the bag to ensure that nothing unexpected will happen.

The party is for friends, two of whom are children of my friend Elizabeth, one who is their cousin.  They have all graduated, two from high school and one from college.  My family always loves going to their house, we have spent many happy hours growing up with them.  We also have the kind of relationship with every one of them, where no matter how much time has passed, it is like we were just together yesterday.  We pick up things where we left off, like we never missed a beat.

By now we also know most of their extended family, and they always make us feel welcomed as one of their own. Even though I am tired when we leave our house, we stay much longer than I was thinking I would be able to.  We enjoy good food, conversation, and we even play volley ball. It all feels like home.

When I get home, I find I need to change my bag again.  Ugh!

(PS I am posting this while Steve is out so there are no photos yet.  Check back tomorrow to see the sand art.)