Friday, October 31, 2014

Sunday, October 11

I think I will not wake at four this morning, since there was a party somewhere on our street that went on until after twelve this morning.  I couldn't stop listening to the way the voices would rise and fall in the most melodious pattern. There were so many layers of sound it was amazing, and it was all made of voices.  It just went on so long.  When it finally stopped, I quickly fell asleep.

I did wake at four, and stayed in bed trying to fall back to sleep, but couldn't. Finally I decide to get up and exercise.  I haven't done this since my father passed away, and I need to keep strong to continue recovering well. I do some floor exercises and dress warmly to go for a bike ride, only to open the back door to find it raining.  I contemplate going anyway, and remember I won't be able to jump in the shower if I get cold, so decide against it.  I am Elphaba once again, afraid of the rain.

Anna picks me up  to go to the grocery store and listens to my good news and so good news from the doctors visit yesterday.  I tell her I have decided I will focus on being in the minority of people who don't have a recurrence of cancer.  My goal is to try and make it until 90 in good shape.  My great grandmother make it into her nineties, so I know I have it in me.  I know that this is not necessarily a choice I get to make, but I can try for it anyway.  I want to be around for my kids, and their kids, and to see the little ones I have helped to raise grow to be adults too.  Wasting time with cancer is not really on my schedule.  Not that anyone chooses to be in this club, but I don't have to sit around and feel sorry for myself, and miss out on life.

Sunday October 12

Today was such a busy day.

I arrive at church around eight, to meet about the task force I am working on.  I know I need to be home shortly after church is over to get unhooked and I am counting on Sandy coming over later, rather than earlier.  The actual time I should get unhooked is eleven thirty, and I will still be in Sunday school.

We are working on symbols of our faith today, and the kids are all busy painting their chalices. We make them out of an overturned flowerpot and a saucer.  It involves painting and gluing, and a lot of cleanup.  I get a call at eleven thirty sharp, there is a visiting nurse at my house to unhook me, it is not my usual nurse Sandy, but a new one named Summer.    I call her back and tell her I am at church with no quick way home. She offers to come and pick me up and bring me to my house, but once she gets to the church, it is clear that she is embarrassed that her car is not clean. It doesn't  to me, but I can tell it really bothers her.  I suggest she unhook me at church and we find a quiet spot where she unhooks me very quickly.  Now I can return to my room and help with the clean up!  Dena gives me a ride home. 

After church, Steven and I have been invited to a birthday party not far from our house.  It is for one of my former babies who is turning eight!  We walk over and have a very pleasant visit until I start to hit that tiredness wall.  After a little drunken conversation, we head home, and I end up taking a three hour nap.

When I wake up, I am crazy hungry, and want food quickly.  Specifically, I want soup.  Steve goes to the Gourmet House and gets some hot and sour soup, which is a little too spicy for my tongue, but feels good in my stomach.

Steve and I snuggle on the couch after that and watch the Simpsons and Brooklyn 99, a fairly new comedy with Andy Samberg.  My kids like this show and highly recommended it.  It is just the kind of entertaining, funny and mindless television I need at the moment.  We haven't done this in a while, and it feels nice to veg out and be close.

We spend some time talking about my doctors visit on Friday, how it was really good news, and how well I am doing with this treatment.  I am lucky to have such a positive and supportive partner and friend in life.

It has been a lovely full day, and even though I had that long nap, I am tired by ten and asleep shortly after.

Tuesday, October 28, 2014

Chemo #8

Friday, October 10

I wake up at six forty five this morning, and I want to take a shower and put on a fresh bag before I start the day. Filipa is coming over to help out today, and I worry that she might come over before I am out of the shower.  I unlock the front door just in case, then take my shower.  These morning activities don't usually take too long, but I guess I am just in worry mode today.  I am showered and all set to go well before seven thirty.

I get the kitchen in order, wash some dishes left over from last night, and make our cups for the day.  I label each cup with a picture and a name, the older children can read their name, they younger kids can identify the picture.  I write the names of the children in capital letters which is followed by a simple drawing like a star, dog, cat or some seasonal item like a pumpkin or ghost.  It is amazing how quickly children can learn to identify their names as well as those of their friends.

I start to pack up my knitting bag late, it is quarter to eight, and I need to be at the Fain building in fifteen minutes.  Fortunately it only takes us two minutes to get there.

In no time, I am registered and Faye is there calling me to come back to start my treatment.  I am in the Mega suite today, which is where I received my first treatment.  This treatment area is on the right side of the building.  Even though I get a pod with at window, it is south facing, so it doesn't get too bright.  The pods are a little larger on this side of the building though, and fit Steven, Kaileigh and I comfortably.

I get my blood drawn, and then head out to get my temperature and blood pressure taken and weigh in.  I am only four pounds less than I weighed back in May, before all this started.  Yay!  I think this is the perfect weight to be at, but people still want me to gain more. 

We are all shown to an examination room, where I will see the doctor and find out the results of my CT scan. Dr. Safran opens the door hesitantly, and peeks in.  He says he is looking for my chart and will be right back.  He closes the door, and then opens it again.  "I have good news though," he says "I just need to get your chart."  He returns a few minutes later, chart in hand, smiling.

The CT scam looks very good.  The spots that were in my lung, the ones he told me not to worry about, have disappeared.  The growth in my colon has shrunken down so small, it will be easy to remove. He needs to go over my liver scans and count the spots, which I only know number more than ten.  They have shrunken down and are very small.  I need to schedule an appointment with the liver surgeon, Dr. Charpentier, to come up with a plan on how we will treat the liver.

The colon tumor will definitely need to be removed.  I think this is the first time I have heard him call it that.  The removal of the tumor and reattachment of my colon should be no problem.

Depending on the number of spots on my liver, there are three possible options:

                                1  Remove the section of liver with spots, the other lobe will                                                                       grow larger over time.
                                2  Burn away the spots with heat.
                                3  Continue chemo for a full year with no liver surgery.

Dr. Safran is very happy with my response to the treatment I have received.  It still seems like I will have to have at least two surgeries

He asks me if I have any questions.  I ask him to clarify some things for me about my possible options, and then ask what the possibility of recurrence is.  He hesitates before he answers me, and says it is very high.  I wish I hadn't asked.

I go back to my pod and wait for my blood work results.  It is taking a long time again, so I know without being told that my white blood cell count is down again.  It does turn out to be low, but they can still treat me. I will need to come back on Tuesday to get another pegfilgrastim injection.

I realize I have left my backpack at home, along with lunch for Steven and Kaileigh.  While Kaileigh goes home to get it, Steve and I talk about what Dr. Safran has told us.  I am pleased with the first part, but wished I hadn't asked the recurrence question.  I am feeling very sad about this news.  I am not excited about the chemo for another year option.  I thought my timeline would be like this: do the twelve chemo treatments, beat the cancer, get operated on and put my colon back together and be done with this by the end of the year.  Things are not sounding this way today.

For the first time since I have been having chemo, a friend stops by to visit me during my treatment. This is perfect timing.  It is Alex, who is on his way to work, but took a detour to stop by.  It is fun to have someone unexpectedly come by and say hello.  It is a nice cheering distraction after the news of the day.

There is a new helper for the lunch lady today.  It is a young female resident, who has silvery blue hair.  She is very pleasant, but seems a little unsure about what she should do.  She comes by early and offers us snacks or beverages.  We talk about her hair, because it is so stunning, and she tells me she just did it last night.  I also find out she has a year left to go on her residency, and she is helping out with snacks and lunch to get to know the patients.  What a great idea.

I have an egg salad sandwich, while Steve and Kaileigh have the saag panneer left over from last night.  I am a little jealous, the panneer smells really good.  After I finish my lunch, there is still a little left over, so I have that for dessert.

It is one thirty when I am all done and free to go, smack dab in the middle of nap time.  We decide to head to Seekonk to pick up my framed picture of the foxes.  I love the way it has come out, it looks great.

When we get home, I settle in playing with the little ones. They tell me about their morning, we have some snack and go outside.  One of the mothers who stops by to pick up her child, tells me of a friend who has the same type of cancer I do.  She keeps outliving the prognosis she is given, and goes on to the next new development and experimental drug.  This news makes me feel better.

Cynthia has brought by a new lasagne recipe she has been working on for us to try for dinner. It is full of vegetables and feta cheese.  My whole family loves it, and decides that what she has made is wonderful the way it is, and we all agree, she shouldn't change a thing.

My brother in law, Brian, has given Steven and I tickets to see Cinderella at the Providence Performing Arts Center this evening.  I feel like I will be too tired to make it through the show.  Instead, Alex and Filipa go.  Filipa was excited about going, and Alex a little ambivalent.  In the end, they both really enjoyed the show.

Monday, October 27, 2014

Monday, October 6

This is where things start to feel perfectly normal.  I have my ostomy situation under control, I know what to expect.  I know when I have chemo, I will have side effects, and it will involve weepy eyes and finger tingles.  Sometimes, like when I went out for a walk this morning, I will have odd, cold induced sensations. Today it was feeling like I had fuzz on my nose.  There wasn't, it must have been a neuropathy thing.

I feel like my body and my brain have adjusted to this new state of things, after four months of going through life in a bit of a fog.  Still, I feel apprehensive about Friday. I will find out the results of my CT scan, and receive my eighth chemo treatment.  Will things be as good as they were last time, or will they be different?

It is a fine day outside, and during our morning walk, we find over forty pumpkins.  This is something we like to do starting at the beginning of October, see how many pumpkins we can find.  This is a very good number of pumpkins so early in the month.

Ellen stops by today with some bread, at the insistence of her three year old daughter. She has started going to another preschool, and misses us very much.  We have a nice little visit, with the promise of a longer one on another day.

I walk to CVS, the bank, come back, work on my blog and go to bed early.

Tuesday, October 7

 After writing and writing for weeks, I feel like I have nothing to say. 

It was an ordinary day, we made chocolate chip heath bar crunch cookies,  walked, ate napped and played, our usual rhythm. 

I went to knitting, blogged, bed.

Wednesday, October 8

Today I received a surprise in the mail.  It was a gift card and a knitting book from my friend Julie, called Knitmare on Elmstreet.  You can imagine the projects inside: ghosts, zombies, haunted houses, skulls and scary clowns, all to be knitted!  There is a lot of fun to be had here.

It is so nice to receive the sweet surprises people send me in the mail, or stop by to drop off.  They are so appreciated and loved.

Thursday, October 9

It is a beautiful playground day, with so much treasure to be found!  Besides cabbage leaves, green beans and the usual assortment of clips, elastics and bottle caps, the kids find a five dollar market coin, and fifty cents in pennies, dimes and a quarter.  What a haul!

Kaileigh comes over and makes me saag paneir before we head to stained glass.  On our way we stop and bring some to Feather, who is doing laundry just up the street.  Such a considerate friend! We go to bed and make good progress on our project.  She cuts, I grind.  Maybe by next week we will have all of our pieces cut!

Sunday, October 26, 2014

Friday, October 3

Today is my son Alex's twenty second birthday!  He celebrates by spending the day with his girlfriend.  It sounds like they have a great day planned: a picnic, purchasing a new video game and rollerskating. A day made for Alex.

Sara takes the day off to take care of some dad related business, but there are only a few kids today, so that is no problem.

In the evening I go to see Boxtrolls again with Steve, Valerie and her boys.  They all enjoy the movie as much as I did.  For me it was good even after seeing it for a second time. 

Every side effect from my chemo seems to be earlier or longer this week.  My tingles are stronger, and I still have them today.  They are usually gone by Wednesday.  My mouth is still sensitive, it did not appreciate the Klondike bar I put into it today.  Still, this did not stop me from eating it, it just made me SLOW DOWN!

My bags continue to come loose, but instead of over the weekend as I have come to expect, it starts on Wednesday this week.  Since I now know what it feels like when the bags start to work their way off, I have had no disasters.

October 4

Last night, I felt like my brain shifted into a somewhat normal place.  In the middle of the night, I woke up and worried about those nagging things you think about at two in the morning.  Are the smoke detectors working?  Is that smoke I smell from someone's woodstove, or is my house on fire? You probably know what I mean.  I haven't had these worries in months.  It was nice not to have those occasional irrational wee hours of the morning wakings, but it does tell me that my brain is focusing on more than what is happening internally.

I do feel like my body is full of chemo, like it is in my teeth and ears, that I am saturated.  As I approach chemo number eight next Friday, I am starting to think about life after chemo.  I know there will be an operation, and a recovery.  How long will that take? What side effects will I still experience? I have plenty of energy now, will I have the same or less? Will my brain be the same? This is something I have worried about, but now that I am coming out of the fog, I wonder if that is good.  How will I be changed? How will I thank all the people who have helped me get to this point?

I get up early and clean up before Anna picks me up to go grocery shopping.  Tingles are still strong in my hands, so she helps me with the cold things, helps me unload and put things away, and brings me to my hair appointment.

I left my cell phone on silent last night, and this morning I don't know where it is.  The plan had been for me to get Alex's car from Steve at the laundromat, but somehow the morning slipped away while Anna and I were shopping, and there wasn't time to get it.

After Leslie finishes with my hair, I try calling Steve from her phone, but it goes straight to messages.  I decide to walk a little, and call Steve when I find a phone.  This was a bad idea.  Of course there are no phones, and I think that he might come looking for me, so I don't want to veer off the usual route just in case.  I contemplate stopping by the one friend I have who lives nearby, but I don't feel like walking up the hill to her house, and continue on.  As I resign myself to walking the rest of the way home, Amy stops her car to say hello.  I can not believe my luck! This is the best surprise.  She picks me up and we get to have a visit as we drive.  She was heading to Blackstone Boulevard for a run because she overslept and missed her usual Saturday morning class.  I am unbelievably lucky!

I make Alex, Steve and myself some breakfast.  It is almost eleven, and I haven't eaten yet.  Probably not so good.

We are going to celebrate Alex's birthday today, and he would like to go to the carnivorous plant show at the Roger Williams Park Botanical Garden.  It is kind of creepy, but very cool.  We learn about a project involving pitcher plants being raised to help develop a drug for people with HIV.  We think this might be a project Kaileigh would be interested in.

We wander around the outside gardens, having never visited this part of the park before.  The gardens are still very beautiful even though many of the plants have been affected by the cooler weather.

The park is teeming with bicyclists.  There is a cycling event today and the roads are jam packed with cars from all over the country.  Somehow, in all this car meyhem, we find we are parked very close to Valerie's car.  Amazing.

As we are leaving, we decide we will come back this evening to see the Pumpkin Spooktacular with Ayla, Chauncey, Kaileigh and Josh, who are all planing to come over to celebrate Alex.  This is an event where thousands of carved pumpkins are lit along pathways in the park.  I haven't been in a few years so this sounds like an excellent idea to me.

We wait for Ayla to finish up at Pastiche.  The bus boy called in sick, and it has been a very busy day.  She is trying to help get the dishes caught up and is running late.  We meet her at Chili's, Alex's favorite restaurant. By the time we are done eating, it is pouring rain, not the night for a jack o lantern walk.  Instead we decide to go bowling at the East Providence Bowling Academy.  We have such a good time!

October 5

Church, chapel.
Have lunch with Steven and Alex when I get home.
Shop at WFM with Alex.
Work on computer, so many emails!
Go to dinner.  Have a good time.
Work on blog way too late!

Saturday, October 25, 2014

Tuesday, September 30

I sleep late after picking Steve up at eleven thirty last night.

This morning I feel like my bag is coming loose, even though I changed it yesterday, further evidence that my body must be full of chemo.  This is the kind of thing I know to expect on the weekend coming up, not today.

Interestingly enough, this weekend while Steven was in North Carolina, he was the guest of one of the men who developed the glue used on ostomy bags.  He was part of a team of chemists that were trying to figure out what works and what doesn't.  It turns out that there was a group of people at 3M who had ostomy bags and were giving very precise input on what needed to be changed to make the most effective adhesive that would do the least amount of damage to skin surrounding the stoma.  Steve mentioned that I had been having trouble with the adhesives was thinking it was from the chemo.   His friend confirmed that they are aware of this problem, that there are a series of trade offs that need to be made. It can be made to stick better during the chemo, but the skin would be at risk for excoriation, which would put the user at risk for an infection.  This was useful information to have.

I have a CT scan scheduled for today at one, so Filipa is coming over to help out.  She has been awesome coming to help out so often.

Steve brings me to Rhode Island Medical Imaging for one o'clock, I manage to get one child down for a nap before I leave. 

The scan goes fine, the tech turns out to be someone I went to East Providence High School with.  She thought I looked familiar when I came in, and compared birth dates to be sure.  She was right.  Although many people come by for CT scans every day, she said she seldom sees people from our class.

Things happen as they did for my last scan, but this time I am stronger and a little heavier. 

It is my hope that this scan shows it is possible to have surgery soon. While I can call tomorrow and find out the results, I decide I will wait until I see Dr. Safran.  There is not much I can do with the information before I see him anyway.

I have had to skip lunch for the CT scan, so when I am done, I am very hungry.  Steve takes me to Five Guys for lunch.  I haven't had a hamburger in weeks, by mistake I order a double. but manage to eat the whole thing, no problem.

Knitting tonight was nice, a woman who hasn't been by in a long time stops in.  Her husband is taking a tai chi class that is running the same time as our knitting, and it seems to be helping to bring people in.

Wednesday, October 1

It is cold and wet today, a typical rainy fall day.  When we take our walk today, it is drizzly, but I wear my fuzzy black gloves for warmth.  As we walk, they get a little damp, and my fingers start to tingle.  It gets increasingly worse, despite my attempts at flapping and clapping to get them to warm up.  At one point I get the kids to jog with me in an attempt to get warmer blood flowing into my fingers.  I jog as fast as I can without covering much ground, I need to keep pace with two year olds. 

The only thing that brings relief is getting out of the cold and getting my hands warm and dry.  I am so glad I have a glove wardrobe on this day.

I attend a Prucom meeting in the evening, and volunteer to be on a task force to get the youth more involved and connected to our congregation.  I leave the meeting energized.

Thursday, October 2

Last night I went to bed fully expecting to be up at four this morning.  I slept until seven.  I didn't get that jittery feeling until later in the morning today.

We make pizza this morning, it feels so good to kneed my fingers into the nice warm dough.  This activity makes my fingers warm and tingle free.

It is cold and damp again today, so when we go out for a walk, I wear my fishing gloves.  Before we get back to the house, my fingers are cold and tingly again.  I am hoping for a nice extended Indian Summer.

While we were busy making our pizzas for lunch, my friend Ginny Fox stops by with a surprise for me.  She has brought fox statue for my garden.  He is very handsome with a sweet face.  I love him and so do the kids. We put him in the garden closest to the sandbox so he can watch over the children while they play.  I love that I have a fox from Ginny Fox!

Kaileigh comes over early, goes shopping and makes some dinner, a yummy lasagne.  Her friend Feather stops by with some olive bread.  It is a day of lovely surprises!

When we go to stained glass class tonight, I find that handling large sheets of glass take the heat right out of my fingers, making them tingle.  Somehow the smaller pieces don't bother me as much.  I approach the grinder we use to smooth the edges of the glass very cautiously.  It uses water to keep the fine particles of glass out of the air, so we don't inhale it.  I am afraid it will make my fingers cold, but tonight they are okay.

Friday, October 24, 2014

Sunday, September 28

Chemo stink not so bad today.

I get up and make a bagel with egg and cheese, along with at blueberry muffin.  I didn't really eat enough yesterday.

It is still warm outside, so I decide I will ride my bike to church this morning.

Children's chapel reflects on the Jewish holidays of Rosh Hoshanah and Yom Kippur. It is a nice service with rousing music.  One of the girls in my kindergarten class really loves music, so I am happy that we have good tunes today.

As we teachers walk our children back to class, I chuckle.  I have on my chemo backpack, and Dena has crutches because she has a broken bone in her knee.  We are a scrappy crew.

Our lesson today is called The Magic Vase. It is about how changing one thing in your home can affect the whole house. At the beginning of our class, as the children start to gather, I ask them to draw a picture of their house. I tell them they can make their house the color that it is, or a color they wish it could be.  I tell them I would live in a rainbow house if I had the courage to paint it that way, and not worry about what the neighbors would say.  I realize how often this word, courage is coming up in my life lately.

We have a lovely class.

The ride home on my bike is warm.  I stop by Seven Stars to pick up a treat for my visiting nurse, Sandy.  She will be coming to unhook me soon.  I am feeling hot and tired and swollen today.  My hands feel hot and they are red.  Maybe this is from the heat?  I am trying to drink extra water today.  I know I didn't drink as much as I am supposed to yesterday, and then I have taken a bike ride today. 

I heat up some of the pasta that Rita brought over on Friday, and it makes me feel well again. 

I am feeling the need to be still and quiet today, so after I am unhooked, I water my garden, then I sit and paint for a few hours. 

September 29

Steve has been in North Carolina all weekend, and will be coming home this evening.  It has been a busy weekend for both of us, and we have only been able to text each other occasionally.  I am missing him a lot.

Things are the usual Monday mess in my house, it has been a drop and go weekend.  Instead of exercising this morning, I will get things straightened out.   I manage to get the garden watered before my first child is dropped off. 

I am hoping to catch my friend Polly as she brings her daughter to the bus stop this morning.  It was her birthday on Saturday, and I still haven't wished her a happy birthday!

By mid morning, I am super tired.  We take the kids to the playground and this wakes me up.  I make it to naptime, and then snooze with the the kids.  I sleep in the rocking chair and when I wake up, I feel like my breath smells like chemo.  I think my body is just so full of chemicals, it is finally coming out in my breath. 

At my Happiness group this evening, we have pizza, roasted veggies and cake for my birthday, a treat from Kathleen.  We play some games, a different twist on Happiness.  For our October meeting we plan on going to Pronk! Fest, and meet later in the month.

Wednesday, October 22, 2014

Saturday, September 27

I stink of chemo this morning.

Today is my wake up early from chemo day.  I am awake at three thirty, and try to go back to sleep knowing I probably won't.  It is okay though, because I want to bake for a leadership retreat at church this morning, and this will give me time.

I want to make some blueberry muffins, and feel so grateful for the gloves Marcia has given me.  My fingers are extra sensitive to the cold today, and many of the ingredients I need, yogurt, butter, eggs and blueberries, are all located in the refrigerator.  It is strange to say, but it feels good not fearing the fridge.

I get my muffins baked, eat a few and still have time for a bike ride.  I haven't been for a ride in over a week, and I wonder how difficult it will be.  I dress pretty warmly for the fifty eight degree temperature outside, and head out.  No tingling in my fingers or toes, and no sore throat.  More things to be grateful for.

My ears get cold for some reason, so I pull my hood up over my helmet and pull it tight.  After going around the boulevard once, I am warm in some parts of my body and cold in others. I am afraid to uncover the parts that are overheated though, the thought of trying to get myself warm again is exhausting, so I stay bundled up.

I get home, change and head out to the retreat.  I need to pick up juice and bagels on the way, I also get some bread and fluff for the What the Fluff fest we are going to later in the afternoon.

The retreat goes well,  accomplishing everything the Prucom intended to.  People are informed about our timeline to select a new minister, and long and short term goals are agreed on for the future of our congregation.  All this is done, and the meeting ends on time, twelve noon.

When I get home, I find that my sisters and brother have been trying to reach me since nine thirty this morning.  They have been trying to get into a storage unit my father had rented, and my name is on the contract.  My dad lived with me when he rented it, so he put my name on the paperwork.  Even with a copy of his death certificate, they can't get in.  I show up and though the name my dad put on the contract is not even listed on my license, we get the information we need.  He had put me down as Katherine Boyd, a name I have never legally gone by.

Once we are told the number to the locker, we realize no one has a key.  My sister couldn't find one,  I have no idea where the key would be at my house, and they don't have a copy of the key at the storage locker.  A locksmith needs to be called in to get into the unit.

I am not much help to my sister, because I need to go to the What the Fluff Fest.  Alex, Allie and I on our way to pick up Filipa, who is the Pharaoh of Fluff.  She needs to get to Sommerville Massachusetts to perform her royal duties; greeting, waving and having her photo taken. 
I am hoping to become the next Pharaoh.

The Fluff Fest is a celebration of all things Fluff.  For those not familiar with Fluff, it is a creamy whipped marshmallow flavored spread, that goes well with peanut butter in a fluffernutter sandwich, and tastes wonderful atop a cup of hot cocoa.  It is like a marshmallow, without the chewy outside, just all the fluffy goodness that lives inside.  There is a fluff bake off, where fluff is used in interesting ways, and many fun kid activities.  Fluff jousting, or a fluff hairdo anyone?

We hit a little traffic on the way through Boston, so we arrive later than our two forty five goal.  The organizers of the festival are relieved to see Filipa when she arrives, they haven't done a very good job of keeping in touch with her in the last year, and they were not sure she would show.
The Pharaoh of Fluff and her Nutella Knight
Filipa has made a costume for herself and for Alex, and done a beautiful job.  The Fluff crown is help by the festival committee all year, so she hasn't worn it since last September!

Kaileigh meets us at Union Square where the festival takes place.  She lives in this city, about a twenty minute walk from her apartment.  Right away we head for the Union Square Donut tent, where they have fluffernutter donuts!  The line is long, but it moves along quickly.  We get a couple for Ayla and Chauncey, who will be coming by after Ayla gets out of work at four, and one for Steve who is North Carolina at his conference.

From there we wonder around, checking out tents for food and wares.  There is a steampunk theme to the festival this year, so there are vendors geared toward that.  I spot a nice cape that will go with my Cancergirl outfit, which I am wearing.  I have forgotten my towel cape at home, and feel like I need this cape for my Pharaoh take over.  I am hoping we can make this into a Cancergirl adventure.

Holy cow Radioactive Man, is that a new cape on Cancergirl ?
We watch some of the fluff events, kids fluff jousting, people making fluffernutters blindfolded, all thrilling events to watch.  We decide to head over to the main stage and on the way check out the food for the Fluff bake off, S'more brownies, Fluffernutter pie with Chocolate Marshmallow Ganache, Fluff My Nutter cake, BaklaFluff, and Fluff Sushi.  I am not hungry since I had a fluffernutter in the car on the way here, but some of these things look pretty good. 
Well, maybe I am hungry for a little something.
 I have been looking around the square for signs of when the Pharaoh competition will be held, but  don't see any.  I finally talk to Admiral Dave, a former Pharaoh himself, whois involved in the organization of the event. I am told that they are not holding a search this year.  That part of the event didn't get planned.

I am very disappointed.  It is a little silly, but I really thought that I could do this very brave thing this year.  I would get up in front of a whole bunch of people answer some silly questions and swear to uphold the deliciousness of Fluff.  Maybe it is just the chemo talking, but I was ready.  Next year, without the chemo, I may not be so brave. 

Sunday, October 19, 2014

Chemo #7

Friday, September 26

I am nervous about chemo today.  The last two weeks I have been tired and blaming it on all the running around, visiting my dad in the hospital, then the funeral and wake.  I realize I also haven't been out exercising, eating well or drinking enough, all for different reasons.

Chemo is late this morning, not until ten.  Kaileigh is coming with me this morning, but she is coming from her friends house across the city where there is no early morning vacuuming going on.
Steve left earlier to go to North Carolina where he will speak at the Carolinas Secular Conference this weekend. 

Kaileigh and I head over to Seven Stars at nine fifteen, I want to buy the valets some treats today.  They are always so attentive and friendly, and with this small gesture, I want them to know I appreciate them.

We arrive at Fain 3 early, but Carolyn calls me from the reception area right away.  My blood is drawn, and I see Bess for my weight and blood pressure.  I haven't gained any weight this time, but I haven't lost any in the last two weeks either.  This is good.

I see the physician's assistant today, Meghan.  I haven't met her before.  She has a very open and friendly manner, and we talk about my side effects.  She is concerned about my latest development, bleeding gums when I brush my teeth.  I also have bloody mucus, and keep showing signs that I might be getting my period, but it never happens.  All of my soft outer tissue is very sensitive this week.

My stools are also very soft, in the past it has only been this way Monday though Wednesday before chemo, this week I still have it.  I am looking forward to having my usual chemo bunny poops.  It is much easier to deal with.
Meghan is going to schedule me for a CT scan sometime soon,  Yay!
She brings me back to my pod, where I am hooked up to my premeds while we wait for my bloodwork results.

Claire is away this week, so no reiki today.
Carolyn is very happy to see my numbers today.  The pegfilgrastim injection did it's work, and my white blood cell count is good.  The big news is that my carcinoembryonic antigen levels, or cea number, is down from last month, way down!  It was 664 in August, and today it is 36.  This means my chemo is working! Doctor Safran is so pleased he comes by to be sure I have heard this news and gives me a big hug.  This is the perfect time to present him with a copy of the fox painting my tattoo comes from.  It is a lovely way to celebrate my good news.

Kaileigh's Fox Painting
Right away, I get benadryl, and it makes me dopey, but  Kaileigh doesn't seem to notice.  We talk about my dopiness on chemo, I am worried that some of it might stick. Kaileigh assures me that after the initial silliness wears off, I seem fine. She has talked about it with her dad, and they both think it is kind of cute.

Kaileigh gets a call from Josh, Carolyn is hooking me up to my chemo, and Lenore the lunch lady arrives, all around the same time.  Kaileigh goes someplace more private to talk, Carolyn has to stop explaining what my the cea number is all about, and Lenore tells me what is for lunch.  Earlier she had stopped by to me that chicken salad would be on the menu, something they don't often offer.  I take one of those on marbled bread, and eat it even though I don't really like it.

Eventually, Carolyn comes back to tell me about my cea, and Kaileigh returns to catch me up on what is going on with Josh.  He has been in California for a job interview and I am eager to hear how he  has done.

 While all this busyness is going on, I am trying feverishly to get a hat knit.  I want to try and get it done today.  I have had to start over three times already, I keep losing track of what is happening on my set up row.  Maybe this environment is too exciting to knit in.  I manage to finish the last row just as Carolyn hooks me up to my oxyplatin, it is quarter to four and time to go home!

As we head home, I suggest that we might head over to Seekonk to pick up my original of the fox watercolor that I have had framed.  As we approach the highway, I realize this is a bad idea.  We are about to head into Friday rush hour traffic, and we are hoping to make it to a showing of Boxtrolls shortly after five. 

We come home to find Sara and Jill, my nephew and one daycare child in the backyard sandpit.
Kaileigh heats me up some pasta and pesto that Rita had dropped by this morning.  I am always surprised that people want to feed me, but so delighted and grateful to receive it.  I end up eating the pasta in the car on the way to the movie theater. Alex, Ayla, Filipa and Chauncey are all meeting us at the movie theater, for opening night. The pasta is delicious and keeps me from getting over hungry.  I am so happy to have it.

My fingers are especially tingly tonight, I am so glad to have my fuzzy gloves with me. The theater is cool and I need them while I watch the movie.

The Boxtrolls is everything I had hoped it would be, maybe even better.  The animation is beautiful and different from Pixar.  The characters look kind of waxy, like Madam Tussaud's wax figures, but the effect is good for this movie.  Steve will want to see this movie, so I think I may see it again, which is something I rarely do.

When it is over, Kaileigh needs to catch a train back to Somerville, but is worried about me driving.  My head returned to normal while I was sitting watching the movie, and I don't feel drunk anymore.  I promise I will go slow, be extra careful, and call when I get home.  Sounds like a role reversal here.

Ayla and Chaunce go to their house, Alex brings Filipa home, and I work on my blog.  As hard as I am trying to catch up, I am always a month behind.  I am hoping to get at least a week closer again.

I make a cup of cocoa with my special birthday gift mix, add some fluff, and sip it while I work.  Mmmmm...a special cool weather treat.  I am warm and happy.

At first my typing is clumsy, but as my fingers warm up it gets better.  I need to wear my gloves as I type because the tingles are extra strong.  No weepy eyes yet, and my dopiness has subsided.  My weekend is off to a good start.

Saturday, October 18, 2014

Monday, September 22

This evening we invite my two brothers and sisters over for dinner.  My niece and two nephews come too.  It is fun to have everyone coming over.  My brother Howard and Cherelle have never been to my house.  The last time they were in Rhode Island, my family was living in a tiny apartment.

I don't even know the last time until this weekend that we spoke to each other.  I remember being on the phone with him in this house, but it was so long ago.  So many things have changed in that time.  If you were to ask me why I haven't spoken with him in so long, I wouldn't have a good answer.  We never call each other.  There was a time when he would tell me that he was praying for my soul, but that never bothered me too much, I would just think whatever, and say thank you.

I have been to visit my brother three times since he has been in Michigan.  Once when he was getting married, when Cherelle was born, and when his wife Margo passed away.  These events all happened when my mother was still alive.

It is good to sit down and talk with him, to catch up on his life.  His story is not an easy one, but he seems to be doing okay in spite of some health setbacks.  He has a good attitude, which is half the battle.

The life of the party is Cherelle though.  She is so excited to see everyone, and thrilled to get the photos we have found for her in our collections.  These are photos she has never seen before, some are with her mother which she is so grateful to have.

My brother Tim lives only thirty minutes from my house, but we also seldom see each other.  It is all a matter of bad timing, I guess.  At holidays he often has other plans, and for birthday celebrations, he is often not available.  It is hard having a young family.  It takes so much time.

Even though Jill lives in Ohio, I see her more often than either of my brothers.  She would come to visit Sara and our dad at least twice a year, staying for a few weeks each visit.  She has just moved into a new house recently, and I am hoping to go visit her there sometime.  I guess it is just different with sisters than brothers.

We eat and talk, but it is time to part too soon.  Cherelle and Howard have an early flight tomorrow.
Everyone gives hugs and says goodbye.  It has been a short but sweet evening.

September 23

I get up early and decide to focus on getting the house straightened out.  I am not feeling like I have the energy for both a bike ride childcare and today.  Is it the chemo?  Is it from having such a busy weekend?  Is it from my dad?  I am not sure, but feel it is best to go with this feeling of not wanting to push myself.

At knitting this evening someone asks if the knitters can fit all of our yarn into one cabinet.  I am not sure what this is all about, since I believe we are only using one, but I agree to check it out.  To my surprise our collection has grown, and I can see why this request was made.  We opened our cupboard to find it full to the brim, and then started checking other cupboards and it was as if we had tribbles from the original Star Trek series on our hands.  There was so much more yarn than I remembered!  We did what we could to get it in as few cupboards as possible, and promise to try and resolve the problem.

September 24

I have been sleeping and dreaming so deeply lately.  I wonder if this is because I haven't done this for so long.  Sleep has seemed long and dreamless, and I have been waking at earlier than normal hours.  Now I am sleeping later and remembering that I have had dreams.

At daycare today we make so many chocolate cookies, we supply many of our friends in the neighborhood with them.  We leave bags on doorsteps for people to find when they return home from their day.

In the afternoon, after putting the nappers down to sleep, I feel very tired.  When I am playing with one of the girls on the floor, she tells me to lay down and take a nap.  While I am pretending, I fall asleep.  I don't sleep long, but it is a little funny.  I have been tricked into napping by one of my trickiest nappers!

Steven takes Alex out to look at used cars, and he comes home the owner of a car!  He has found a Chevy Cavalier that he could afford, and it seemed like a good deal.  He is so nervous about driving now, afraid he will make a mistake.  I am so proud of him for saving his money and getting something he really wanted.
Alex and his new car!

I go to bed early tonight, hoping that extra sleep will get me through stained glass tomorrow.

September 25

I finally make it to stained glass this evening!  Kaileigh has decided to come to class with me so we can work on a project together.  She is the reason that I do stained glass.  When she was in middle school she wanted to learn how to make windows.  Not wanting to do it herself, I told her I would go with her, and we learned together.  We continued on until she graduated high school and went to collage.  I continued to go on Thursdays, pretty regularly until last spring.

I am very happy to be working on a project with Kaileigh, even though I still have my big church window waiting to be finished.  We have decided on a pattern we would like to use and select some glass.  We can't really start to cut our glass this evening, we need to enlarge the pattern, so Kaileigh helps me take paint off of my big window to leave details on the glass.

We leave a little early so I can get ready for chemo tomorrow.

Friday, October 17, 2014

Sunday, September 21

It is the day after my father's funeral, time to regroup and begin again.

Today is our second Sunday school class.  This is probably one of the best places to be after experiencing what at First Unitarian we call "a milestone event in our lives."  To be among young children is one of the most uplifting activities that can happen in a day.  They are unfettered by the problems adults so often let bring them down.  Not that they don't get sad or worried, but they tend not to dwell excessively on these things, at least not until they get a little older.

After church I have been invited by one of my families to a bouncy house birthday party.  I am really looking forward to this.  I am hoping I get to go in the bouncy house!

When I arrive the kids are so excited.  They gather at the side of the bouncy house to day hello and press their faces into mine.  They invite me into the bouncy house right away. Now I am so excited.  I wiggle in though the toddler sized door and bounce and talk to children I currently watch, or have cared for at some other time.  It is a bouncy house reunion!

It is an odd thing to be in the bouncy house with a bag pulling at my belly with every bounce.  I wonder if this is something I will ever really get used to, the constant small reminder that my body is not all together.  I bounce away anyway, trying to keep my bag under control and forget about it.  The only time I achieve this is when I get out of the house.

The party is great, I get to visit with some parents I haven't seen in a while, and have more lengthy conversation with some I see every day.  Shortly after the cake, I leave to meet my daughter Ayla.  We are curious about where my dad is buried, and are planning on going to the cemetery to check it out.

The ride out to Exeter takes awhile, maybe forty five minutes, but it is a scenic.  Only a few of the trees have started changing color, but the grey brooding sky makes a dramatic backdrop to the early golden and green leaves.  It is as if we are in a movie, sadness with impending rain.

The cemetery is huge.  I text my sister to find out where my dad's grave is.  We were told yesterday, but numbers don't stick in my head on a regular day.  The main part of the cemetery is set up like a big wheel, with spokes that lead to different sections.  My dad's grave is far across a huge field of stone markers that lie flush with the earth.  Once we find the right section, it is easy to find the grave.  It is in a row of graves that is not yet complete, with freshly disturbed tan colored soil.  His temporary marker is the last one in the row, with room for many more beside him.

It reminds me of the rows of bunks found in the sleeping quarters on a battleship.  Uniform and stark, with a designated space for each enlisted sailor to stretch out in, not an inch more than what is needed.

There are rules posted in the cemetery, about what you can and cannot place on gravesites.  There is evidence everywhere that these rules are not strictly followed.  Candles, stones, figurines, hats, all kinds of mementos have been placed on the markers by loved ones.  They are snapshots of the former lives of those bones that lie beneath the uniform stone markers. My father's grave is topped by a small, temporary green frame with his name on it.  Grass seed has been spread, but not watered.  It looks so barren.

Ayla and I decide to go to the farmstand just up the road to see what we can get to make his space seem like more more than the dusty patch that it is .  There are many beautiful plants bursting with color filling the greenhouse.  I try to keep in mind that this plant will be on it's own, and most likely not last long.  I end up buying daisies.  We go back to the cemetery and encircle them with rocks so they won't blow over.  There is a small pile just to the side of his marker, as if someone had anticipating our need. 

I realize that my father probably would not care if there were flowers on his grave.  He was not a man who worked the earth, or who was drawn to blossoms.  These are more for me, and to somehow indicate that here lies a man who was known and loved.

We drive home and they grey sky finally releases it's gathered sorrow.  This will help our daisies grow.

Thursday, October 16, 2014

Funeral Day Continued

Sara, Jill and I climb into the limo that will drive us back to Cumberland.  This is an interesting experience.  Our driver, who was positioned toward the back of the black car procession of flower and casket cars, had clearly been the lead in getting people safely through difficult merges and intersections.  He drove slowly and cautiously.  Now that the funeral was over, it felt like he couldn't get home fast enough.  We took I95 as long as we could heading toward Cumberland, and did we ever fly.  Every curve was a new adventure in life, especially Thurbers Avenue.  I didn't ever feel in danger for my life, but boy, did we make good time.

Part of the limo service includes a ride to where ever it is you need to be next.  Our destination was the club, but Jill and Sara had both left their cars at the funeral home, so we needed to get dropped there.  We wait for my sister Jill's friend who has been caring for my young nephew throughout the two ceremonies.

While we are waiting, Sara and I go through cards that have been left in memory of my father.  Not being raised in a Catholic tradition, I am puzzled by the mass cards that we recieved in my father's name.  They are beautiful cards, richly decorated and lettered.  They have been purchased so that people will continue to pray for my father, and keep the memory of him alive.  I find this to be a very loving gesture, but I can't really understand it.

By the time we arrive at the club people have been there for a while eating and drinking.  I am surprised by how few people are there, mostly family with a few friends mixed in. 

I am so hungry my teeth are hurting.  This seems to be the latest new development in chemo side effects.  I take a couple of those wonderful little sandwiches catering companies specialize in, the kind on the little torpedo rolls.  I quickly need to get another.  I can't believe how hungry I am.  I sit with my kids and Josh, Filipa, Chauncey and my niece Julia.  I wonder if I should be sitting at the "grown up" table for my family, but this is really where I want to be. 

Once I am done eating, I go to see my cousins Brenda and Christine who are sitting with their Mom, who is my dad's sister, my Aunt Sandra.  I haven't spent any time with them in a few years, so we do our best to catch up.  We talk about my Dad, and our health.  My Aunt is going through her own cancer issues, that I had heard about but never really checked in on.   I realize that sometimes I get so caught up in my own life, I forget to check in with others.  We decide will try to do a better job of keeping in touch.

I talk to my Aunt Anne Marie, who is only a couple of years older than I am.  I always loved being around my cousins and Anne, we had such fun when we were younger. 

My niece Cherelle comes in with her dad, my older brother Howard.  Howard is in a wheel chair.  He limped through the funeral this morning, but his hip bothers him, so he is using his chair.  They came in from Michigan last night, and I haven't really spoken with them.  My younger brother Tim has been chauffeuring them around, and comes in too.

I help my brother get some food, and see that he is settled in.  We talk a little, when I notice my niece is surveying the crowd, looking a little lost.  The last time she and my brother were  here was shortly after my mother passed away.  She was ten then.  Now she is twenty seven.  She wants to meet aunts and uncles she barely remembers, but doesn't know where to start.  I introduce her around, and she is so excited.  It is a rare opportunity to introduce family to family in this way.  I love seeing her so happy.

Friends and family come and go, and after a few hours I am not only tired, but starting to get that creeping sensation.  This is not chemo weekend, so it is the one where my bags don't stay.  I contemplate doing a change in the bathroom at the club, but I can't bring myself to do it for reasons that probably make sense only to me.  Instead, Ayla and Chauncey bring me home just in time to avoid a blow out.

Alex drops off Filpa at her house and comes home, Kaileigh drops Josh at the train and comes back too.  It is late in the afternoon, and we are hungry.  We forgot to take some of the extra sandwiches from the club, so we are on our own.  We decide that Indian food from the food court at the mall is what we need, a special comfort food for a long and emotional day.

When we get home, I decide that we should sort though that big box of photos in my closet.  I text my sisters, and they want to come over to join in. Jill, Sara, Kaileigh and I spend the next four hours looking through all the photos in my huge bin.  We don't even get to all the photo albums.  We laugh over hairdo's and clothing choices, and reminisce about where photos were taken.  My sisters make piles of photos they like, I won't let them take those they don't.  We find quite a few photos of my dad, and put them aside for another time.

Wednesday, October 15, 2014

Funeral Day

Saturday, September 20

This morning is my father's funeral.

The whole house gets up early to get ready. Kaileigh, Josh, Alex and Filipa will go in one car, Steven and I are getting picked up by Ayla and Chauncey.  We need to be at the funeral home by eight fifteen, so we leave at seven thirty.  Of course we have left too early once again, and arrive almost a half an hour early.

At the funeral home we wait, not really sure what we are supposed to do.  Once my sisters arrive, we all go inside.  Everything looks the same as when we arrived last night, neat and orderly.  We take the seats along the wall and wait. 

The priest who is to conduct the ceremony comes in, and we meet him for the first time.  The Reverend Galligan will be doing a short ceremony at the funeral home, and then a Mass of Christian Burial at St Joseph's Church shortly after.  It was our hope that my father's Mass would be at his childhood parish, but the priest there said he couldn't do the ceremony since he hadn't seen my father there in recent memory.  This was upsetting and seemed rather cruel.

Reverend Galligan spoke to us briefly, and wanted to know what my father's hobbies or interests were.  Not one of us answered this question for the man.  I know there were things that ran through my head, Nascar, watching auto rescue shows, collecting tools, reading the newspaper cover to cover each day, spending time with his family, but I never mentioned one thing.  This poor man had to deliver a short celebration of my father's life, not knowing much about him.  When he got up to speak though, he did a beautiful job.  He spoke about how we start from seeds, and grow like the flowers that are around my father's casket.  How we grow, then die and then go to Christ.  When he talks about the crucifix over the casket, I need to look up.  I am not sure there is one there.  There it is, towering above the casket, just as it should be.

After prayers are said, it is such a long wait before anything happens.  Everyone sits quietly, while the video collage and its new age non offensive sound track drones on and on.  I wish I could get up and say something about my dad, but I can't.  I wish some other brave soul would, but it doesn't happen,  We sit and wait.

Finally they call the pall bearers to form an honor guard.

Then we wait, as each occupant in every car in the procession is called.  Jill, Sara, Steven and I go last, we ride in the limo.  This is not how we were thinking we wanted to go.  Ayla and Chauncey should have come in the limo too, it would have been easier on Chauncey's healing leg. It is too late to change things though, the cars are already lined up.  There never seemed to be an appropriate time to discuss this.

We drive to St. Joseph's Church, just a short way down Mendon Road.  We wait until the other family members are all parked and in the church.  Then we follow my father in, Jill, Sara, Steven and me.

There is a bagpiper standing in front of the door to the church playing Amazing Grace.  My father would have liked this.

The pastor gives us quiet direction about what is about to happen next.  He tells us our dad has been blessed with holy water once in his life, during his baptism, and now when he will go to heaven.  There is water sprinkled on the casket by the priest, and then a covering is carefully unfolded over it by Jill, Sara, Steven and myself.

It feels strange to me to be taking place in this very sacred and religious ceremony.

We follow my father down the aisle, Steven and I together, then Jill and Sara.  There is a pew for us in the front of the church.  My kids are all in one pew in the middle of the church.  They seem so far away.

The priest does a wonderful job, considering he never met my father.  He calls his ceremony a celebration of life, and talks about how my dad was a family man, well loved by his community and his friends.  There are songs and prayers, none of which I know.  There is a communion ceremony, which seems like everyone takes part in, except the front row of family.

When this is all over, we follow the casket back out of the church, stopping to be blessed once more and to have the holy blanket removed.

At this point we ask Ayla if she wants to drive to the cemetery in the limo with us.  She does, and Steve ends up driving with Chauncey in her car.  The ride to the Veteran's Cemetery is in Exeter is long, forty five minutes of a funeral procession.  We cross two major intersections, merging onto route 295, and then route 95, finally crossing four lanes of traffic to get onto route 4. We are amazed at how well everyone manages to keep together.

We  arrive at the cemetery and are instructed to stay in the limo until the casket is removed from the hurst.  The pall bearers carry the casket into the chapel with no help from wheels.  There is a flag draped over the casket, it looks a little crooked.  My dad would not be happy.

The chapel is small and sparse.  There is a small lectern in the corner and a base to rest the casket on. There are floor to ceiling windows on either side of the room with grey flagstone walls behind the casket and the wall opposite.  The funeral director leads the family in, and shows us to a small row of pews. All of the other guests stand behind or beside us.  The chapel is very full. The flag on my father's coffin is now straightened.

The voice of the military chaplain booms from behind the lectern.  He looks like Friar Tuck in his vestments.

A male and female soldier stand behind the casket as the prayers are said.  Once the prayers are done, the soldiers stand at opposite ends of the casket and salute.  My brother Howard is beside me.  He salutes too.

The flag is taken off the coffin and expertly folded by the two soldiers with mechanical precision.  Fold, crease, fold crease, until a neat triangle of stars in a blue field is left at the end.  The flag is handed to my Uncle Dana, my dad's brother and best friend.

We are told there will be a military salute, and to prepare ourselves.  I am not sure what this means until I hear the beginning of taps played outside the large window to my right.  It starts and fades like an unfinished tune.  Then a shot is fired.  It is startling.  A friend cries out in surprise, but I don't hear her, I only know because she apologizes later.

I was expecting the rifle shots, but still surprised as they rang out.  There is a shot, the clanging of the spent cartridge falling on the slate below, the clicking of the rifle being reloaded and all repeated two more times with uniform precision.  The sound fades, the ceremony is over.

This is our last goodbye to what remains of my father.

There are windows on either side of the slate wall behind the casket, and out of one I can see the arm of some kind of heavy machinery.  It doesn't occur to me until I see a truck zip past behind the crowd of mourners gathered outside the chapel that this is the machine that loads the casket into the cement casing in which my father's remains will be entombed.

People mill about outside, wiping away tears, hugging, commenting on the beauty of the day.  Small talk to help ease the pain, the emptiness, the loss.

The driver stands by the limo door, looking at us in a pleading way.  He opens and closes the door slightly as a signal that he is ready to go.  We are not, so we take our time until our guests start to leave.  Everyone has been invited to the Filibuster Club in Cumberland for refreshment.  This is a place where my dad was so well known and loved.

Before we climb into the limo, I say goodbye to Steven.  He is going to New York City to take part in the People's Climate March.  He was going to cancel his plans to march, but I wanted him to go.  He needed to be there for his organization, the Humanists of Rhode Island, as well as representing for our family.

Tuesday, October 14, 2014

Thursday, September 18

I wake up this morning surprised.  I went to sleep last night expecting that I would a wake to one of those electric mornings.  I slept until six, with no jitters.  Was it because of the injection I had on Monday to boost my white blood cells? Is it because I started taking vitamins?  Whatever the reason, I slept well.

My neighbor Polly stops by with a collection of black clothing from her closet.  The only appropriate thing I own is a dark grey wrap dress that Polly gave me last week when she was cleaning out her closet. I had asked her earlier if she might have a black sweater I could borrow, and she brings me an assortment of things to choose from.

Filipa comes by to help out with daycare.  We make cupcakes and cards to celebrate the third birthday of one of our friends.  Alex and Filipa watch the kids so I can go with Steven to his doctor's appointment.  Because Steven and I arrive home at the same time that a mom comes to visit, we end up having an upside down lunch today.  Upside down lunch is when we get to have dessert before we eat our lunch.  Oftentimes it is because something has interrupted lunch prep, or I am not quite ready when the kids are and I know they are hungry enough and like lunch enough that they will eat it even after having something sweet first.  Today I am not so sure that everyone will like lunch, but we sing "Happy Birthday" frost our cupcakes and gobble them up.  To my surprise, everyone eats lunch too!

Kaileigh texted me that she is coming in from Somerville to have dinner and hang out.  This may seem very Rhode Island of me, but I can't believe she wants to come down again with such a traffic riddled drive.  When she gets here, we manage to gather everyone together, Kaileigh, Ayla, Alex, Chauncey, Filipa, Steven and me, and we go to the Gourmet House to get some dinner. 

We figure out what time we will have to meet for the wake tomorrow and say our goodbyes.

September 19

Wake Day

I awake early feeling jittery, these side effects are late this week.  My right ear is plugged up and I can't hear well, so I decide to put some drops in it to help clear it up.  While I am waiting for the drops to work their way into my ear, I fall back asleep until six. If only it could always be this easy.

Steven is up already gathering laundry.  It is unusual that he should be up before me, but this week he has had a burst of organizational energy. Because of the funeral on Saturday, he won't be able to get laundry done before he needs to leave for the Climate Change march in New York, so he is getting it done today.
When I get up, I debate whether I should shower now or later.  The weekend where my bags don't stay adhered is here, so I put too much thought into this matter.  I decide I will be rushed later, so it will be better to shower now, and start the day with a fresh bag.  I apply one of the bags I haven't had a problem with.  I dress in a wool blend dress with leggings, but it is cool today and I am still cold, even though I wear a coat and gloves outside.  Time to start doubling up on the leggings.
There are only three children today, which makes a very easy day. Filipa is coming to help so I can leave for my father's wake in the afternoon.

Once the kids are down for naps, Steven, Alex and I get ready.  Ayla comes by to pick us up, and we arrive at the funeral home half an hour early.  Kaileigh, Josh, Tim, Jill and Sara arrive shortly after. 

We go in to get ready for our night.  My father lies there in peaceful repose, a rosary laced through his fingers.  This seems so odd, because I don't ever think I have seen a rosary in our house growing up.  This was important to my dad though, to have a Christian burial, and this is part of it.

My dad is dressed more casually than anyone who is coming to see him tonight.  He has on a white tee shirt under his flannel shirt, and his USS Barcelona jacket that he wore pretty much everywhere. His baseball cap rests on the edge of the coffin.  This is classic Freddy.

The funeral home has made a video collage set to music that plays softly by the entrance to the room.  There are flowers around the coffin, a heavy curtain behind.  A plush funeral kneeler is beside the coffin, chairs placed along the right wall for family to greet mourners. There are only a few chairs, but we pull more over to accommodate my dad's sisters and brother.  One of his brothers and his mother are not able to attend.

We sit in a long row, greeting people after they pay their respects to my dad.  Jill, Sara and Tim are at the head of the line.  I come next, and my dad's sisters, Sandra and Anne Marie, and then his brother Dana holding the last seat.

Many people come through.  Some are friends of family or relatives, some relations we have met at family events and not seen in a long time.  There are relations we have only heard of and never met.  There are people my father has known for years, some that knew him as a child, people he worked with.  Some younger than my father, some peers, some older.   So many people my sisters and brother and I have never met before.  It is a short three hours, spent greeting many, many people.

This is gratifying and surprising.  If you were to ask me who may father's friends were, I would only be able to list a few names.  It turns out my dad had this secret life away from us, where many people loved and respected him.  There were stories of sweet things my father had done for people, ways he helped them out, encouraged and inspired them.  This was clearly a different person than the one I knew growing up, where he would come home from work exhausted falling asleep in an easy chair snoring until late in the night.  This was my quiet dad, illuminated by the love of those who knew him.  They were here to express their sorrow and grieve for their loss, but sharing stories of a man they loved and cherished.  A man who would help out his friends and family however he could.  This was a man who didn't compromise his ideals, lived life on his own terms and in the end is remembered by the kindness and love in his heart.  Who could ask for a better legacy than that?

Monday, October 13, 2014

Tuesday, September 16

Sara is off for the rest of the week to make arrangement for the funeral, so Filipa comes to help with daycare today.   It is great that she is able to help on such short notice.  She makes it so easy for us by being so helpful, and the kids really like her.

Ayla texts me during the day.  She wants to make macaroni and cheese for dinner.  We will all go to Sara's house this evening to share it.  I am going to bring over my photo collection, and we will go through them together to find some nice pictures of my father for the photo video collage that will be shown at his wake.  Moving the photos proves to be a daunting task, the large container I have them in is not easily extracted from where it resides in the back of my closet.  There are also so many of them, it is not really practical to bring them to another location.

I take several shoe boxes that are on the top of the bin and hope we find a few good ones.

We have a nice gathering, Sara, me, Steven, Tim, Kaileigh, Ayla and Chauncey.  We are hoping my sister Jill will be arriving from Ohio sometime soon, before we need to leave.

The mac and cheese is so good, and everyone of us is hungry.  We need to be sure we leave some for when Jill gets here.

After we eat, we start into the photo collection.  We accumulate a small pile of pictures from a lopsided part of my dad's life.  There are a few from when my mom and dad got married, a few from when my siblings and I were kids, and many from when my children were younger.  My sister has found a small pile from her collection of photos.  I know I have more, but it would take us hours to get through them, and it would have to be done at my house.  We don't have that time right now.

As it gets later, I need to leave.  I am tired.  Kaileigh needs to drive back to Somerville,  Ayla has to work in the morning.  Jill has still not arrived, but hopefully I will see her and my nephew  tomorrow.

Wednesday, September 17

Today I have an appointment with Dr. Lentricia.  I am looking forward to going, because I have a few questions for him.

Alex and Kaileigh will watch the kids while I am at the doctors.  It is so nice that Kaileigh is willing to come from Somerville to help out for such a short time. 

My appointment happens to be at the same time that my siblings and my father's siblings will be meeting at the funeral home to make arrangements for the wake and funeral.  I have decided to keep my doctor's appointment, since there will be so many people making those other plans.  My sister Sara knows what my father expected to have for a funeral, I know that she will do what is best.

Steve and I drive to the doctor's office.  The drive is not long, since it is just after rush hour.  We don't have to wait too long before we get shown to an exam room, and soon we see Dr. Lentricia.  Things look good, he is pleased that I am looking and feeling so well.  I ask him if it is possible for the colon surgery I will be ready for soon, the one where he removes the mass in my colon and reconnects it, to be done at the same time as my liver operation.  He tells me it can be done, but we would need to confer with the liver surgeon first.  It will be up to him. 

I also ask if he might have any insight as to why my ostomy bags don't always stay adhered to me.  I offer my theory about a change in the flora on my skin or my sweat from the chemo, affecting the adhesive in some way, since it is usually fine except for a few days, the weekend after I am disconnected from the chemo.  He tells me the chemo can affect the adhesive.  At least now I know it is not the way I apply my bags, it is something that just need to be aware of.

He tells me that I can take iron supplements, since there has been a concern about my iron levels.  It is interesting how disconnected knowledge seems to be in the different practices.  My oncologist and  oncology nurses are worried about a supplement making me constipated, and it's affect on my stoma.  My surgeon says, sometimes people get constipated, even people who have stomas.  If there is a problem, you can take a laxative.  One doctor says no sit ups, the other says sit ups are fine, any exercise I want to do is fine.  I know that no one knows everything, but it seems there should be a better flow of information.

In all, everything looks and sounds good, and I should return in three months, unless there is a surgery before then.

When I get back home, Kaileigh leaves, and Alex helps me until we get everyone down for naps.  I will sing, he will read.

Before I start naps, I am craving a Klondike ice cream bar.  While I eat it in secret in the kitchen, I realize this is not the best idea.  My mouth is still pretty sensitive to the cold, and by the time I am done, my tongue feels fat and numb, as if I have had a shot of novacaine.  When I start to sing, s comes out as th.  I have lost my low notes too.  This is not my best singing day. 

Alex does much better, coaxing one of the children into falling asleep by reading quietly and stroking her hair.  Soon after she falls asleep, he does too, a hazard of afternoon storytelling.  The two look so sweet sitting on the couch, her little shoulder leaning into him, his head propped on top of hers.  I cover them with a cozy blanket, and they both have a good nap.

Later in the day I talk to Sara and find out the arrangements for the funeral.  The wake will be Friday afternoon, and the funeral Saturday, both in Cumberland.  Following the church service there will be a military funeral at the Veteran's Cemetery in Exeter.  This will be followed by a "time" at the club where my dad had so many friends. 

Saturday, October 11, 2014

Monday, September 15

I start my day worried about bone pain.

I walk over to the Miriam at eight to get an injection of pegfilgrastim, which will help my body produce more white blood cells. On the recommendation of Carolyn, one of the oncology nurses, I take some acetaminophen before I leave my house. This may help to prevent the bone pain.  Ugg.  That sounds so unpleasant.

Jen takes me in, takes my vitals, and gives me my shot.  Quick and easy.  She tells me where I am most likely to get pain, if I get it.  It seems to be centered around the big bones where white cells are made. This makes sense to me.  Also the sternum or anyplace I have had a broken bone.  I think they tell you about the sternum so you don't think you are having a heart attack.

I feel fuzzy brained as Steven and I walk home. By the time I get home, the feeling has worn off.

Sara and I take the kids to the playground today.  It is sunny and warm, not quite warm enough for no coats when we leave.  While we are there it warms up, and all coats are off.

We usually spend some time at the playground section, and then head over to the fountain to look for treasure and play around the fountain. We have a boat I have attached a string to, and we walk it around the edge.  It is fun for the kids, and they do a good job of waiting for their turn.  We have a problem keeping the boat from capsizing, but the kids will let us right it if they are bothered by it, or they pull it on its side.  One of the boys gets upset when the boat tips, and as I reach to fix it, he slides into the fountain.  I grab him before he is all the way in, and Sara and I get his clothes and shoes off and quickly wrap him in my sweater and coat.  He is upset, but cheers up quickly, especially when he gets carried all the way home.

At home we have lunch and naps. I take a nap while the kids are asleep.  I get up before Sara has to leave at three thirty to take my dad to the doctor.

I get a call from Sara around four, and she is crying hysterically.  My father was in her car, and they were leaving the nursing home for his doctor's appointment.  He leaned back and his eyes rolled up into his head.  She stopped her car and ran into the nursing home for help.  They got a crash cart and started working on him in the driveway while they waited for the rescue to arrive.

Sara was upset they wouldn't let her go in the rescue, so a police officer gave her a ride to RI Hospital.

My father was unresponsive, and though they worked on him all the way to the hospital, they weren't able to restart his heart.

I felt badly my sister was in such distress and that I couldn't get to her right away.  Kaileigh was here, but out for a walk.  Ayla came right over, and by the time she arrived, Kaileigh had returned.  The three of us went to the hospital together.  Steve took care of the last child for me, and then took the bus over to meet us.

The emergency room staff took us to find Sara right away.  She was sitting alone in a family room, with a box of tissues on her lap.  She told us that our dad, Grampy to my girls, had died.  It was the most helpless feeling in the world to see someone you love so distraught, sobbing uncontrollably.  I was upset that my father had passed on, but more upset by the anguish and quilt my sister was feeling.  She thought she had killed him somehow, waking him up to take him to his doctor appointment.

My sister, who had taken my father in after he had been living with me and I needed to give my middle school aged son his room back.  She let my father live with her, and increasingly became more responsible for his care as his health declined.  She helped him keep track of his appointments, his medications and getting him to dialysis when he needed help.  She brought him to the emergency room more than once into the wee hours of the morning.  She was so devoted to taking good care of him. Sara had cleaned his clothes for him, let him take over her living room when he could no longer climb the stairs, and made sure he ate. She was an incredible and loving care giver to him, and now she felt like she had let him down somehow,

I volunteered to call his sister, Anne Marie, to let her know what had happened.  This is one of those things you cannot realize how difficult it is going to be until the person you are calling has picked up the phone.  She didn't sound like herself to me, so I asked her a couple of times if it was really her.  Then I had to tell her the sad news.  It was heartbreaking to hear her cry on the other end of the line.  I don't know what she had been doing before hand.  I don't know who was with her to give her a hug or help her deal with the news I had just delivered.  It was one of the hardest things I have ever had to do.

She would call her brother Dana, to let him know, and come to the hospital to say goodbye.

My Dad was Catholic, so Sara had the staff call in a priest to issue last rights.  Kaileigh, Ayla, Sara and I all went to see them administered and to say goodbye.  It was surreal to see my father laying there motionless on the gurney.  He was still intubated from the resuscitaion attempt, they couldn't remove the tubing until the medical examiner arrived.  His arms were bruised from all the medical procedures he had gone through in the past few weeks.  It was hard to think of his repose as peaceful with that ridged tubing coming out of his mouth.

We watched as the priest rubbed him with oil and said Hail Mary over him.  We stood there motionless and silent, watching, waiting, not knowing what to do.  When it was all over, we each took a turn saying our goodbyes in our own individual way.  I touched his hands, still warm, but cooling, rubbed my nose against his, touched my forehead with his, gently kissing it before turning away.  He still smells like my dad, just cooler and waxy. I hug my daughters after they say their good byes, and my sister, before we leave his bedside.

Shortly after we return to the family room, we start to talk about where the wake should be. My brother Tim, Steven and Chauncey arrive followed by Dana and his wife Terry, and Anne Marie and her husband Rick.   We hug and say how sorry we are for each other.  We lost our father, they lost their older brother.

Tim and I go with them to say goodbye to their brother.  Anne Marie is sobbing so hard, but trying to be strong.  I give her a big hug.  It is sad to see them looking and touching and saying goodbye.  I was worried that I had done the wrong thing, told them the wrong way, made it harder for them by calling them here, but somehow it seemed like the only thing to do.  How do you prepare for this?  How do you know what to do, who to call and when?  It is all such a a surprise when it happens, even though we all know that eventually, it will.

We go over what we need to do next.  Call my brother in Michigan, my sister in Ohio. 
Although my father lived in East Providence for most of his life, his friends and most of his family are in Cumberland where he grew up. We decide the wake should be held in his hometown.  His brother will call the funeral home, and he thinks he can get a bagpiper, something my dad always said he wanted at his funeral.

These things decided, we move on to other things.

We leave the hospital, nothing to sign, we can just go. In a world filled with so much paperwork it is a little unsettling, like it is not official.  It feels strange to just leave, and then things will just happen because we said this is what we wanted.

We need to get Alex, from Whole Foods.  His shift is just ending, and he doesn't know yet.

Sara's car is still at the Nursing home, so Steve, Alex and I go to get it, and pick up my dad's things.  We are looking for his phone, the one that Sara picked up for him on Saturday, because he couldn't get his old one to work.  It was not in his shredded clothing at the hospital, and we don't know where it is.

When I get to the nursing home, I get Sara's keys from the receptionist.  She tells me she is sorry and that they did all they could.  I thank her and ask her if it is okay to get my dads stuff.  She tells me to go on up and get it.  I ask if I need to do anything else, she tells me no.  They can take care of any lose ends through the mail.

It feels weird to just take my dads stuff from the room without telling anyone, so I go to the nurses station to tell them what I am doing.  I realize this is more for me than them, they seem clueless about what had happened.  One of the nurses starts looking around in a back room for his belongings until I explain that this has all just happened this afternoon, and that his things are still in his room.

We don't have a bag, so we pile the few things he has there, some clothes, his candy, odds and ends.  No phone.

We go outside and look around the driveway for it, thinking it may have dropped in the grass when they were working on him, but not knowing exactly where they were.  Alex calls over from the car.  He called the number, and can hear it ringing in the car.  We unlock it and find it in the console.  Dad must have put it there when he got into the car.

As I sit down to get the phone, I can smell my dad in the car.  This is going to be hard for my sister, I think.  The scent is so strong, and so fresh.

By the time we make it back to my house, everyone is so hungry.  Ayoko had brought over some chili earlier in the day, Kaileigh brought some saag panier when she came over and it turns out to be like the miracle of the fishes.  The food we have manages to feed seven hungry people. It is delicious and warming.  There are even cupcakes Ayla had brought over for my birthday. we are all well fed.

Before we finish dinner, the organ donor people call.  It is so strange, we wonder what they would use?  Did they know my father's history?  No kidneys, his lungs, liver and heart weren't in good shape, he was blind in one eye.  Sara asks if they can call tomorrow.

Friday, October 10, 2014

Sunday, September 14

It's my birthday!  I celebrate right away be sleeping in until eight, something I rarely do.

When I come downstairs, there is a stack of packages on the table.  I don't know who they are from.  It is a fox mug and fox salt and pepper shakers.  Maybe they are from Alex?

Steven makes me some eggs for breakfast, and then I ride my bike off to church.  I am dressed nice and warmly and there are no tingles anywhere.

Today is the first day of Sunday school, a day where we start in the big church to share the flame.  We light our Children's chapel chalice, the symbol of our religion, and bring it next door to our children's chapel.  It is also the Blessing of the Backpacks, which is something new this year.  It is to help our children and other back pack carriers to start this year off with a good feeling, and wishes for a good year.  It also ties into a project at the church where they are collecting backpacks to support the education of girls, through this organization:
My blessed backpack, with birthday fox wearing a backpack.  

Since it is a chemo week, I am wearing my backpack, and get it blessed.  This consists of some kind and encouraging words said in unison from the congregation and a flaming chalice backpack tag to hang off our packs.  One of my daycare friends is there, and we are happy that we now have matching backpacks, even though hers is pink and mine is purple.  So fun!

Our class is small today, only seven children, and two of them are daycare friends.  We will see if our class grows as the month goes on.  We have a labyrinth we sit on for our sharing circle, a time where we light our own classroom chalice and pass around the talking stick to share things about ourselves and get to know each other better.  Our word for the day is threshold, a beginning place. That special place between the inside and the outside of a door or entryway, where a new adventure can begin or end.  We decorate the inside of our door to make it friendly and welcoming to all who enter. It is a good way to begin our year.

My ride home is hot, the day has warmed up and I am wearing a wool dress which was great for the ride in.  Not so great for the ride home.  At least there is a nice downhill ride near the end.

I wait for Sandy to come and unhook me, and then have some soup that my neighbor Polly has made for me, along with warm chocolate pudding I made while waiting.  With whipped cream of course.

I thank Alex for the mug and salt shakers and he confesses that they are not from him.  They were on the steps when he came in last night, so he put them on the table so I would find them in the morning.  A mystery!  Is it my sister, or my friend Nancy.  The foxes are in a Talbot's box, this could be a good clue.
A foxy group of birthday foxes!
After lunch, I head to the garden, and so many friends pop by to give me birthday wishes!  It is such a fun way to spend the day.

I am still having trouble with liquids, room temperature water gives me the tingles.  I need to drink hot stuff, but I don't like tea that much.  I make a cup no matter how I intend to finish it, it always seems to go cold before I do. The only thing I like less than hot tea, is cold tea.  I decide to bring my water bottle out and set it in the sun, and it is the perfect temperature to drink.  I may have to start keeping water in a sunny spot when it is cooler out.

I manage to get all the front gardens weeded and the lawn mowed.  I still have more to do, but find that I am running out of daylight.

I finally hang the peace flags up that friends from church have made for me.  I line my driveway beside the house with them, because there are so many, and I spend so much time here.  I can also see them out my kitchen window, another place where I spend a fair amount of time.  They are cheerful and look beautiful.

By the time I am done, I am too tired to go and visit my father.  It seems too complicated to figure out how to get there and I am tired.  I will go and visit him tomorrow.