Wednesday, October 22
Ayla and Filipa drive me to the Miriam Hospital, where I will have my MRI done. We park in the back of the building, on the street, right near the basement entrance to the MRI lab. My appointment is not until six, but we arrive early, around five forty. I am anxious about getting there on time, which is silly since it takes us minutes to get there.
We have to wait until the patient before me is done, so we pass the time watching the advertisements for the upcoming election which are playing constantly on the television. I am so glad I rarely watch tv.
I am finally called and told to change out of my clothes into a johnny and pj pants. Everything must come off except for underwear. There can be no metal in the machine, although I don't need to take off my wedding band. Before I get admitted to the MRI room, they scan me with a metal detector, just to be sure there is no other metal in me or on me.
WHEEEW WHEEEW WHEEEW WHEEEW WHEEEW WHEEEW WHEEEW WHEEEW
is the constant backdrop of noise in this room. I had imagined that this was caused by the magnets in the MRI, so I ask the tech about it. She tells me it is the sound of the "chiller," the name they call the hydrogen based cooling system that keeps the magnets cool. It is always on when the machine is on. The tech tells me they are so used to hearing it, that when it is not on it feels strange in there.
There is a curved plastic bed, which is part of the machine, lined with a blanket. A pillow lays at the entrance to the tunnel where I am to put my head. I am directed to lay down on the bed by one of the two technicians working with me. One places a pillow beneath my knees, and a blanket over me. The other tech is busy hooking my left arm up to a IV machine that will deliver contrast dye into my veins at the proper time in the imaging. There is a large, black, rectangular fabric that is draped over the trunk of my body. It is imbedded with nine camera type, which will record images of my abdomen. In my left hand, I hold a ball to squeeze if I feel the need to stop the machine for any reason.
The fluorescent lighting on the ceiling is covered by a photograph of a palm trees with a blue sky beyond. I realize this is probably put up there to relax people who are nervous. I wonder how well it works.
I am told it is very loud in the machine, and I will be wearing headphones to help block out the noise. They will play some music for me, anything I would like. I knew this from my PET scan, but never thought about what I would listen too. I would really like to listen to NPR, but the tech seems so intent on music, that instead I ask for whatever they have on easy listening. The headphones are placed over my ears, and my bed slowly glides into the machine.
The interior is low and close to me, white with a grey strip painted down the middle. I imagine that I am floating in a tunnel, where the traffic line is on the ceiling. I do not feel scared or claustrophobic, I close my eyes and listen to the music. The first song that comes on is familiar, but I can't remember what it is called, or who the artist is after it ends. It is about dancing and breathing, and I wonder if this is another attempt at calming people down.
As I listen, I open my eyes and wonder why they have chosen to paint the interior of the machine white. It seems like they could do something beautiful with this arched tunnel, put something that would give seem to give it depth, and make it more pleasant for people who are uncomfortable in such a tight space. I am thinking something like the ceiling of the Sistine Chapel, or the aurora borealis.
The imaging starts with a short whine. A voice comes over the headphones checking on me, and asking about the music. For some reason, the music stopped and turned into a conversation between two men speaking in German. The tech apologizes, and puts on Elton John, Don't Let the Sun Go Down on Me. Is this supposed to be inspirational too?
At this point, I am wishing I hadn't requested music. Although I like this song, I find it distracting from the sounds of the machine. Sometimes they come in short, measured bursts, sometimes one long tone. One of the sounds reminds me of the haunted riverboat ride at Crescent Park ,
where I spent plenty of time in my youth. It is a short low blast, like the one that would go off when the car you were seated in entered the dark, haunted interior of the ride.
As I listen to the sounds I wonder if anyone has come up with any music that syncs to the tones you hear inside the machine. It would be some kind of funky, intense music.
The tech comes over the headphones and tells me when I need to hold my breath while they record some of the images. I close my eyes and count, wondering if I will get to the end of each image without having to breath. The highest I count to is thirty, and it is no problem.
There is one long image they take, after they tell me they are starting the contrast IV. The sound from the machine is scary at first, like some kind of alarm. It is made up of short and long bursts and I can feel the anxiety rising in my chest. As it goes on, I find the rhythm of the sound and ease into it. There is this vibration that also goes along with this sound, it pulsates along one side of my body across to the other, down along my left leg, and up my right leg again. It continues on for several minutes. I enjoy the vibrations and the movement of the sound.
After thirty five minutes of being in the tunnel, I am told I am done, and the bed slowly slides out. I am unhooked and free to go. Before I leave I ask the tech about the sounds, the machine makes and she tells me they are from the magnetic gates as they open and close.
I get dressed and go out to find Ayla and Filipa. They greet me in the waiting room. It is now seven thirty and pouring rain. I am so glad we didn't walk.
Ayla drops Filipa and me at home, and we heat up some beef stew. I have been craving it since my birthday, and finally made a pot of it this morning. It has cooked and cooled and been heated up again, and is just the right meal for a rainy night like tonight.
In June 2014, I was diagnosed with adenocarcinoma. What this means in regular language is that I have colon cancer. It has also spread to my liver. I am currently being treated for stage 4 liver cancer. Here is my story...
Friday, November 7, 2014
Thursday, November 6, 2014
A Visit to the Liver Surgeon
Thursday, October 21
Today I meet Dr. Charpentier, who is the person recommended to be my liver surgeon. He is very thorough in his explanation of what my diagnosis is. Although I understand what I am told, I am annoyed and angry. I am also a bit amazed.
He tells me I have done remarkably well with the chemo, and things have shrunken down very well. My colon could be repaired sometime soon, which agrees with what Dr. Safran has told me. He feels my liver will need more time. Although those pesky little spots have shrunken down considerably, I am considered a five for health. This is on a scale of one being good, and five being very high risk. Although I am in good health otherwise, my liver is not in good shape. There is a growth which surrounds the veins exiting my liver, which at this time does not give any clear option in cutting anything away. This news is shocking to me. How can I be in such poor health, and not feel like it? I am not happy with this news.
Dr. Charpentier tells me that to be able to do a good surgery, the tumor around those veins still needs to shrink down more. He draws a picture of what my liver looks like. I wish I had photographed it for you, but I didn't. I was kind of shocked at what he was telling me. He has not seen an MRI yet, since I am scheduled for my first one tomorrow, but he doubts that I will be ready for surgery in this area for a while longer. I will need to finish the twelve rounds of chemo I am currently doing, the Folfox, and then he suggests I could get the mass in my colon removed, recover for about six weeks and then address the liver problems. He thinks I will need to do more chemo. It doesn't sound like he wants to work with Dr. Lentrichia and get two of the surgeries done at once.
The bottom line here is, I will not be done with this cancer thing by the end of this year. I will be on Folfox until December, and then my doctors will see how things look. I will be doing chemo into the next year. This is what his thinking is before the MRI. Once I have the MRI, he will meet with Dr. Safran and they will come up with a plan. He definitely will not be meeting with Dr. Safran before my next appointment, which is Friday.
I am angry because this does not meet my timeline. I am angry because I didn't know how bad my liver is. I am amazed that I can feel so fine, except for the side effects of the chemo, and be considered in such poor health. I am annoyed that I didn't know all this, but also relieved. Maybe I wouldn't be feeling so well if I had known all of this from the start.
To celebrate(!) my most annoying news, I am having a pity party for myself at knitting tonight. I bring ice cream, hot fudge and whipped cream, served with a huge dollop of complaining from me. It is great. The one good thing the surgeon told me is that I can eat as many calories as I can. He doesn't even care about the quality of those calories, he is looking for quantity here. I have been doing my part in that area for sure.
I eat, complain and feel grumpy and pissed off about this. Tomorrow, I will be done with my complaning. I will have my MRI and see what comes of that.
Bottom line: I was/am sicker that I knew.
Top line: I can still get through this. This is my endurance test. I will make it to the end and finish this race.
Today I meet Dr. Charpentier, who is the person recommended to be my liver surgeon. He is very thorough in his explanation of what my diagnosis is. Although I understand what I am told, I am annoyed and angry. I am also a bit amazed.
He tells me I have done remarkably well with the chemo, and things have shrunken down very well. My colon could be repaired sometime soon, which agrees with what Dr. Safran has told me. He feels my liver will need more time. Although those pesky little spots have shrunken down considerably, I am considered a five for health. This is on a scale of one being good, and five being very high risk. Although I am in good health otherwise, my liver is not in good shape. There is a growth which surrounds the veins exiting my liver, which at this time does not give any clear option in cutting anything away. This news is shocking to me. How can I be in such poor health, and not feel like it? I am not happy with this news.
Dr. Charpentier tells me that to be able to do a good surgery, the tumor around those veins still needs to shrink down more. He draws a picture of what my liver looks like. I wish I had photographed it for you, but I didn't. I was kind of shocked at what he was telling me. He has not seen an MRI yet, since I am scheduled for my first one tomorrow, but he doubts that I will be ready for surgery in this area for a while longer. I will need to finish the twelve rounds of chemo I am currently doing, the Folfox, and then he suggests I could get the mass in my colon removed, recover for about six weeks and then address the liver problems. He thinks I will need to do more chemo. It doesn't sound like he wants to work with Dr. Lentrichia and get two of the surgeries done at once.
The bottom line here is, I will not be done with this cancer thing by the end of this year. I will be on Folfox until December, and then my doctors will see how things look. I will be doing chemo into the next year. This is what his thinking is before the MRI. Once I have the MRI, he will meet with Dr. Safran and they will come up with a plan. He definitely will not be meeting with Dr. Safran before my next appointment, which is Friday.
I am angry because this does not meet my timeline. I am angry because I didn't know how bad my liver is. I am amazed that I can feel so fine, except for the side effects of the chemo, and be considered in such poor health. I am annoyed that I didn't know all this, but also relieved. Maybe I wouldn't be feeling so well if I had known all of this from the start.
To celebrate(!) my most annoying news, I am having a pity party for myself at knitting tonight. I bring ice cream, hot fudge and whipped cream, served with a huge dollop of complaining from me. It is great. The one good thing the surgeon told me is that I can eat as many calories as I can. He doesn't even care about the quality of those calories, he is looking for quantity here. I have been doing my part in that area for sure.
I eat, complain and feel grumpy and pissed off about this. Tomorrow, I will be done with my complaning. I will have my MRI and see what comes of that.
Bottom line: I was/am sicker that I knew.
Top line: I can still get through this. This is my endurance test. I will make it to the end and finish this race.
Wednesday, November 5, 2014
Sunday, October 19
Get to church early today. I need to make copies for my class and set up our project for the day. I also want to leave a basket of yarn in the youth group room. I am hoping they might enjoy knitting, and that they will help alleviate our some of our yarn problem.
Kindergarten class is small in size today, but full of enthusiasm. They like learning about honeybees and how they live together in a community, in the same way that people do.
By the time I get home, I don't really have much time to do anything before I leave for a birthday party for one of my daycare friends. I have fun hanging out with the kids and parents, and eat pizza and chocolate cake from Pastiche. I thought I was over my finger tingles, but as the cool cake penetrates the paper plate I am holding, my fingers started to get buzzy. Grrrr!
On my way home from the party I stop by the Gourmet House to see if they have found my reading glasses. I think I left them there last night. They didn't have them. Fortunately I had purchased them at Frog and Toad, a gift shop which is right next door. Although I tried on several pair, I end up getting the same style that I had lost. Is this because these are the pair that look best on me, or because this is what I am used to?
Once I get home, I get so involved in working on my blog, I forget to heat up some dinner. Fortunately Steve comes home early from a meeting, and makes me some food. I finish up with my blog so we can watch the Simpsons Halloween Special, and Brooklyn 99. Another nice night snuggling and vegging out in front of the TV.
October 20
This was supposed to be a Happiness night, but instead we go to the Gamm Theater workshop to see a performance by Chance. He was my first daycare child! I am so proud to see him perform. He does a scene from Of Mice and Men, playing George, with one other actor who plays Lenny. The scene is great.
It has been amazing to see Chance grow as a person and a performer. When he was young, I would see him act in plays with the All Children's Theater. The plays were not always the best, but Chance would always give it his all, throwing himself into his role. It is nice to see how much he enjoys being involved in theater and continues to improve, always with the same zeal he had as a child.
Kindergarten class is small in size today, but full of enthusiasm. They like learning about honeybees and how they live together in a community, in the same way that people do.
By the time I get home, I don't really have much time to do anything before I leave for a birthday party for one of my daycare friends. I have fun hanging out with the kids and parents, and eat pizza and chocolate cake from Pastiche. I thought I was over my finger tingles, but as the cool cake penetrates the paper plate I am holding, my fingers started to get buzzy. Grrrr!
On my way home from the party I stop by the Gourmet House to see if they have found my reading glasses. I think I left them there last night. They didn't have them. Fortunately I had purchased them at Frog and Toad, a gift shop which is right next door. Although I tried on several pair, I end up getting the same style that I had lost. Is this because these are the pair that look best on me, or because this is what I am used to?
Once I get home, I get so involved in working on my blog, I forget to heat up some dinner. Fortunately Steve comes home early from a meeting, and makes me some food. I finish up with my blog so we can watch the Simpsons Halloween Special, and Brooklyn 99. Another nice night snuggling and vegging out in front of the TV.
October 20
This was supposed to be a Happiness night, but instead we go to the Gamm Theater workshop to see a performance by Chance. He was my first daycare child! I am so proud to see him perform. He does a scene from Of Mice and Men, playing George, with one other actor who plays Lenny. The scene is great.
It has been amazing to see Chance grow as a person and a performer. When he was young, I would see him act in plays with the All Children's Theater. The plays were not always the best, but Chance would always give it his all, throwing himself into his role. It is nice to see how much he enjoys being involved in theater and continues to improve, always with the same zeal he had as a child.
Tuesday, November 4, 2014
Saturday, October 18
This is one of those days where big ideas keep percolating down until there is little left of the day.
I get out of bed just minutes before Anna comes to take me to the grocery store. I manage to get up, and dressed and am just putting on my shoes when she knocks on my door.
We get the grocery shopping out of the way, and I think that I am going to get my front and back step railings painted today. I just finish the front when it starts to feel like rain. I had checked the forecast before I started, and the chance of rain was very low. I am beginning to think the act of painting my stair railings is a sort of rain dance. The last time I painted them, a thunderstorm happened by before I finished.
I get the back railing sanded before the rain starts to come down hard. I retreat to my bedroom where all of my birthday cards and gifts still sit in a pile from my celebration last month. I want to write thank you notes, but haven't done so yet. I start writing, and don't stop until Steve gets back from the laundry. I take a short break for food and get back to writing.
The weather has cleared up a little outside, and I am not sure if it will rain again, so I give up on painting and concentrate on the thank you notes. I hope to get something finished today.
Thank you notes are very difficult for me for some reason. It is not the writing of them that gives me trouble, I can usually get them done once I set my mind on it. The hardest thing for me is to get them in the mail. I am not sure why this is, it is just the way it is with me. After my wedding, I had all of my notes written shortly after the wedding. The pile sat in a drawer for years before I threw them away. There have been other times that I have done the same thing. Every now and then a card will turn up that I wanted to send to someone that never got into the mail. I find it much easier to try and give a personal thank you, and I am constantly sending mental thanks.
Ayla texts me while I am still writing, and would like to come over for dinner. I finish up what I am working on and jump in the shower. I have oil paint stuck to my hands and they need a good soak and a scrub, and I need a bag change. This is a good time to take care of all of these things.
I still haven't finished anything I have started today. Well, grocery shopping maybe. But I still need to get a few things at Whole Foods.
Ayla, Chauncey and I go to Gourmet House and have a nice dinner. When I get back home, Alex and Filipa have just returned from an apple picking trip. Somehow we get into an apple stacking challenge, and try to stack up five apples in one minute. We go from apple stacking, to a rock stacking game, and play for over an hour. At this point, I am starting to feel like a zombie! Time for bed.
I get out of bed just minutes before Anna comes to take me to the grocery store. I manage to get up, and dressed and am just putting on my shoes when she knocks on my door.
We get the grocery shopping out of the way, and I think that I am going to get my front and back step railings painted today. I just finish the front when it starts to feel like rain. I had checked the forecast before I started, and the chance of rain was very low. I am beginning to think the act of painting my stair railings is a sort of rain dance. The last time I painted them, a thunderstorm happened by before I finished.
I get the back railing sanded before the rain starts to come down hard. I retreat to my bedroom where all of my birthday cards and gifts still sit in a pile from my celebration last month. I want to write thank you notes, but haven't done so yet. I start writing, and don't stop until Steve gets back from the laundry. I take a short break for food and get back to writing.
The weather has cleared up a little outside, and I am not sure if it will rain again, so I give up on painting and concentrate on the thank you notes. I hope to get something finished today.
Thank you notes are very difficult for me for some reason. It is not the writing of them that gives me trouble, I can usually get them done once I set my mind on it. The hardest thing for me is to get them in the mail. I am not sure why this is, it is just the way it is with me. After my wedding, I had all of my notes written shortly after the wedding. The pile sat in a drawer for years before I threw them away. There have been other times that I have done the same thing. Every now and then a card will turn up that I wanted to send to someone that never got into the mail. I find it much easier to try and give a personal thank you, and I am constantly sending mental thanks.
Ayla texts me while I am still writing, and would like to come over for dinner. I finish up what I am working on and jump in the shower. I have oil paint stuck to my hands and they need a good soak and a scrub, and I need a bag change. This is a good time to take care of all of these things.
I still haven't finished anything I have started today. Well, grocery shopping maybe. But I still need to get a few things at Whole Foods.
Ayla, Chauncey and I go to Gourmet House and have a nice dinner. When I get back home, Alex and Filipa have just returned from an apple picking trip. Somehow we get into an apple stacking challenge, and try to stack up five apples in one minute. We go from apple stacking, to a rock stacking game, and play for over an hour. At this point, I am starting to feel like a zombie! Time for bed.
Monday, November 3, 2014
Friday, October 17
Today was a lovely day at daycare.
Two of our youngest were here for the day, as well as three older alums, whose schools are closed for the day.
We are making pizza for lunch, but it is also the birthday of one of our friends, so we need to make cupcakes too. Because of all the baking, our day is a little behind from the start, but it doesn't matter. We go along doing what we need to do, having a good time. By the time go out for our chicken walk, it is eleven. When we make pizza, we try to be back by eleven fifteen to get our lunch ready for twelve. It is so beautiful out today, it is more important to enjoy the sunshine than to be on time.
Our chicken walk takes us in a different direction from all our other walks. We head south, up Lorimer Avenue, which takes us by an old stump between the sidewalk and the street. Someone, we don't know who, has set out a collection of sea shells, rocks and sea glass. It has been on display since the spring, and continues to change each time we visit. There are often new items on the now crowded stump, even a penny that has been there since the very start. We love to stop and look, touch, rearrange and sometimes add to the collection. I love that the children understand that this is someone else's collection that has been set out to be shared. The kids never fuss when we tell them that we don't take the items from the stump. We continue to visit it weekly, and observe how it changes.
When we arrive at the house where the chickens live, we are rewarded with a backyard visit to the coop. Usually we wave to the animals from the neighbor's driveway, but today, we are invited to go and talk to the chickens face to face. It is funny to hear them answer us when we bock bock bock at them! We even get to see an egg that has been laid in the nesting box.
By the time we got back to the house, it is ten to twelve. We go inside to roll out our dough, spread on homemade sauce, sprinkle cheese and put the pizzas in the oven. While they bake we play outside until they are done. Lunch is late, but the weather is beautiful, and the kids are happy to play together, so no one seemed to mind.
Once daycare is through for the day, Kaileigh, Ayla and Chauncey join us for dinner. There is a sea shanty sing along at the Bucket Brewery in Pawtucket tonight, and they have all agreed to come along with me. Some of my daycare families are planning to be there tonight, and I want to go and be with them too. We talk, dance and have a great time. Such a good way to end the week.
Two of our youngest were here for the day, as well as three older alums, whose schools are closed for the day.
We are making pizza for lunch, but it is also the birthday of one of our friends, so we need to make cupcakes too. Because of all the baking, our day is a little behind from the start, but it doesn't matter. We go along doing what we need to do, having a good time. By the time go out for our chicken walk, it is eleven. When we make pizza, we try to be back by eleven fifteen to get our lunch ready for twelve. It is so beautiful out today, it is more important to enjoy the sunshine than to be on time.
Our chicken walk takes us in a different direction from all our other walks. We head south, up Lorimer Avenue, which takes us by an old stump between the sidewalk and the street. Someone, we don't know who, has set out a collection of sea shells, rocks and sea glass. It has been on display since the spring, and continues to change each time we visit. There are often new items on the now crowded stump, even a penny that has been there since the very start. We love to stop and look, touch, rearrange and sometimes add to the collection. I love that the children understand that this is someone else's collection that has been set out to be shared. The kids never fuss when we tell them that we don't take the items from the stump. We continue to visit it weekly, and observe how it changes.
When we arrive at the house where the chickens live, we are rewarded with a backyard visit to the coop. Usually we wave to the animals from the neighbor's driveway, but today, we are invited to go and talk to the chickens face to face. It is funny to hear them answer us when we bock bock bock at them! We even get to see an egg that has been laid in the nesting box.
By the time we got back to the house, it is ten to twelve. We go inside to roll out our dough, spread on homemade sauce, sprinkle cheese and put the pizzas in the oven. While they bake we play outside until they are done. Lunch is late, but the weather is beautiful, and the kids are happy to play together, so no one seemed to mind.
Once daycare is through for the day, Kaileigh, Ayla and Chauncey join us for dinner. There is a sea shanty sing along at the Bucket Brewery in Pawtucket tonight, and they have all agreed to come along with me. Some of my daycare families are planning to be there tonight, and I want to go and be with them too. We talk, dance and have a great time. Such a good way to end the week.
Sunday, November 2, 2014
Tuesday, October 14
I go to Miriam Hospital for another pegfilgrastim injection today. My white blood cell count is getting low again. I go by myself, so Steve can watch my early arrivals.
My visit is easy. Carolyn takes me in right away, and even though things are looking very busy, I am in and out very quickly. Faye stops by to say hello and tells me she should be here for my next treatment. The nurses here are always so cheerful and kind.
Since I got up late, I didn't remember to take any acetaminophen before my injection and never get to it during the day. I don't seem to have any of the bone pain they have warned me about though. I feel very tired by the end of the day, and my throat is starting to feel a little sore. I decide to skip knitting this evening, and try to get to bed early.
I get my blog post done, and am in bed by nine thirty, but then I can't sleep.
I have these weird side effects lately, besides the tingles. My tongue is swollen, which has caused me to bite the side of it, this hurts especially when I am eating. Another odd thing occurs when I close my eyes to go to sleep, they relax and feel like they are pulled too tightly back into my head. The only way to stop the pulling is to open my eyes, which feel like they have been sealed shut with glue. I need to open and relax them again several times before I can fall asleep. It feels like the problem I sometimes have with my thumbs locking up, like the muscle has contracted too much and it needs to relax. It is very annoying when you are trying to fall asleep.
Wednesday, October 15
Today I understand what they mean by bone pain. It is what I think of as bone tired. The upper part of my legs, deep inside, feel so heavy and tired. There is a dull ache that makes me want to sit down. I take some acetaminophen, and it goes away.
My tongue still hurts, and now I notice that I am talking funny.
This is my night to go out with my friend Nancy, and I am craving a burger. We decide to go to Burger Boys in Lincoln. This is like Five Guys, but better, they also serve ice cream. I get a shake, even though I know this is not the best idea. I am still getting tingles in my throat from cold things, but I drink slowly and manage to get the whole thing down.
Thursday October 16
I am sleeping later and later, I get up at seven fifteen this morning! I wonder if this is the cumulative effects of the chemo, or lack of exercise that is making me so tired. Maybe it is both.
Today I have bonus kids. Two children have the day off because President Obama is supposed to be at Rhode Island College today and two have the day off for Sukkot. We have a busy day planned, with pumpkin painting, baking cookies and a rain walk.
Kaileigh is working late at the Boston Museum of Science this evening, so I decide to skip stained glass. I am tired at the end of the day, and not sure if that sore throat feeling is a side effect of my shot on Tuesday, or if I am coming down with something. Better to say home and take it easy.
My visit is easy. Carolyn takes me in right away, and even though things are looking very busy, I am in and out very quickly. Faye stops by to say hello and tells me she should be here for my next treatment. The nurses here are always so cheerful and kind.
Since I got up late, I didn't remember to take any acetaminophen before my injection and never get to it during the day. I don't seem to have any of the bone pain they have warned me about though. I feel very tired by the end of the day, and my throat is starting to feel a little sore. I decide to skip knitting this evening, and try to get to bed early.
I get my blog post done, and am in bed by nine thirty, but then I can't sleep.
I have these weird side effects lately, besides the tingles. My tongue is swollen, which has caused me to bite the side of it, this hurts especially when I am eating. Another odd thing occurs when I close my eyes to go to sleep, they relax and feel like they are pulled too tightly back into my head. The only way to stop the pulling is to open my eyes, which feel like they have been sealed shut with glue. I need to open and relax them again several times before I can fall asleep. It feels like the problem I sometimes have with my thumbs locking up, like the muscle has contracted too much and it needs to relax. It is very annoying when you are trying to fall asleep.
Wednesday, October 15
Today I understand what they mean by bone pain. It is what I think of as bone tired. The upper part of my legs, deep inside, feel so heavy and tired. There is a dull ache that makes me want to sit down. I take some acetaminophen, and it goes away.
My tongue still hurts, and now I notice that I am talking funny.
This is my night to go out with my friend Nancy, and I am craving a burger. We decide to go to Burger Boys in Lincoln. This is like Five Guys, but better, they also serve ice cream. I get a shake, even though I know this is not the best idea. I am still getting tingles in my throat from cold things, but I drink slowly and manage to get the whole thing down.
Thursday October 16
I am sleeping later and later, I get up at seven fifteen this morning! I wonder if this is the cumulative effects of the chemo, or lack of exercise that is making me so tired. Maybe it is both.
Today I have bonus kids. Two children have the day off because President Obama is supposed to be at Rhode Island College today and two have the day off for Sukkot. We have a busy day planned, with pumpkin painting, baking cookies and a rain walk.
Kaileigh is working late at the Boston Museum of Science this evening, so I decide to skip stained glass. I am tired at the end of the day, and not sure if that sore throat feeling is a side effect of my shot on Tuesday, or if I am coming down with something. Better to say home and take it easy.
Saturday, November 1, 2014
Monday, October 13
Apple picking at nine o'clock! Of course I am getting up late. This is fine though, it is a holiday. I find it hard to believe that I could have slept so late after sleeping so much yesterday.
Our friends pick us up and we head to North Smithfield. We go to our favorite orchard, Bardens, and are some of the first to arrive. The morning is overcast, but warm enough. I have dressed in layers and have gloves and wrist warmers.I am ready for anything.
Before heading out into the orchards, we fortify ourselves with some apple cider donuts from the farmstand. As we head out, we only pass a few people. The trees have been picked over, with most of the fruit located at the top of the trees. Fortunately, we have brought along an apple picker, which is a long pole with a wire basket at the top. This enables us to reach up to the higher branches and reach our lofty treasure.
I hand pick a few apples off some lower branches and discover that crisp, dew covered apples are not for me to touch, even with my gloves on. I become the apple spotter until my hands and the apples warm up. I am delighted to find some Fiji and gala apples on the last tree in the orchard. They are laden with fruit just waiting to be picked. They are my favorite apples and there are small ones here, just perfect for the little mouths and hands at daycare.
More friends meet us at the orchard, and in no time, we are carrying full bags of apples. We head back to the farm stand and set about finding pumpkins. I find eight small ones to paint at daycare this week. My friends buy giant pumpkins to carve into jack o lanterns. It has been a lovely apple picking outing.
By the time we get home, I am pretty tired. I make some lunch and decide to take a nap. I am hoping to go to Pronk! this evening, so the nap should recharge me.
Kaileigh, Josh and Feather have gone on a bike ride to the Blackstone Valley bike path. They come back and get some food at Not Just Snacks. Kaileigh and Feather are planning on going to Pronk! with me, and come in shortly before we need to leave. I am still trying to get dinner ready so we can eat when we return; chicken stew and apple crisp. I have quartered several apples but they are cool and not so easy to slice, since they are numbing my fingers. I put on my fisher gloves, but this makes cutting slow and awkward. Josh comes to my rescue! He is going to stay and finish making dinner while the rest of us go to Pronk!
For those who don't know Pronk!, it is the Providence Honk Fest. It has happened for several years in October on Indiginous People's day as an alternative to celebrating Columbus Day. It is a a gathering of street bands from across the country and globe who come together to share their infectious brand of music with the good people of Rhode Island. It is a crazy good time!
We make it to Wickenden Street well before the parade starts, and scout out a seat across from Cafe Zog. We watch while the parade proceeds down the hill. There are police on bikes, and then a squad car arrives to stop traffic at the very last minute.
The air is filled with the festive sounds of marching bands, drums thrumming, brass squealing. There are huge big nazo puppets, and children with cardboard fish on their heads. Local social organizations dressed in bright colors come cheering and singing, it is a cacophony of sound and chaos, a city street transformed with happy, laughing, dancing people. It is life at the top of the tree, and it is great to be here.
As the parade ends, the observers become participants, joining in the procession and following the bands down to the city's hurricane barrier. Here the parade breaks apart, and bands split off to different stages.
Kaileigh and I are lured by the sound of a familiar tune, and find ourselves in the street in front of the hurricane barrier. The band, Chaotic Noise, which has come in from Seattle Washington, is prancing and gyrating to the music they are making. The crowd joins in. We are all entranced and dancing to their energetic rhythms. They lure us beneath the highway overpass, where the orange street lights cast an eerie glow, but the concrete provides excellent acoustics for the music. We dance, laugh with delight, clap along to rhythms and enjoy the celebratory atmosphere created by the band. There are young children bopping along on the shoulders of parents, and white haired elders getting their grove on. All are enjoying the music together.
Kaileigh, Feather and I all run into people we know, waving and embracing as we go. This is a fine night in Providence, a wonderful place to be alive.
Our friends pick us up and we head to North Smithfield. We go to our favorite orchard, Bardens, and are some of the first to arrive. The morning is overcast, but warm enough. I have dressed in layers and have gloves and wrist warmers.I am ready for anything.
Before heading out into the orchards, we fortify ourselves with some apple cider donuts from the farmstand. As we head out, we only pass a few people. The trees have been picked over, with most of the fruit located at the top of the trees. Fortunately, we have brought along an apple picker, which is a long pole with a wire basket at the top. This enables us to reach up to the higher branches and reach our lofty treasure.
I hand pick a few apples off some lower branches and discover that crisp, dew covered apples are not for me to touch, even with my gloves on. I become the apple spotter until my hands and the apples warm up. I am delighted to find some Fiji and gala apples on the last tree in the orchard. They are laden with fruit just waiting to be picked. They are my favorite apples and there are small ones here, just perfect for the little mouths and hands at daycare.
More friends meet us at the orchard, and in no time, we are carrying full bags of apples. We head back to the farm stand and set about finding pumpkins. I find eight small ones to paint at daycare this week. My friends buy giant pumpkins to carve into jack o lanterns. It has been a lovely apple picking outing.
By the time we get home, I am pretty tired. I make some lunch and decide to take a nap. I am hoping to go to Pronk! this evening, so the nap should recharge me.
Kaileigh, Josh and Feather have gone on a bike ride to the Blackstone Valley bike path. They come back and get some food at Not Just Snacks. Kaileigh and Feather are planning on going to Pronk! with me, and come in shortly before we need to leave. I am still trying to get dinner ready so we can eat when we return; chicken stew and apple crisp. I have quartered several apples but they are cool and not so easy to slice, since they are numbing my fingers. I put on my fisher gloves, but this makes cutting slow and awkward. Josh comes to my rescue! He is going to stay and finish making dinner while the rest of us go to Pronk!
For those who don't know Pronk!, it is the Providence Honk Fest. It has happened for several years in October on Indiginous People's day as an alternative to celebrating Columbus Day. It is a a gathering of street bands from across the country and globe who come together to share their infectious brand of music with the good people of Rhode Island. It is a crazy good time!
We make it to Wickenden Street well before the parade starts, and scout out a seat across from Cafe Zog. We watch while the parade proceeds down the hill. There are police on bikes, and then a squad car arrives to stop traffic at the very last minute.
The air is filled with the festive sounds of marching bands, drums thrumming, brass squealing. There are huge big nazo puppets, and children with cardboard fish on their heads. Local social organizations dressed in bright colors come cheering and singing, it is a cacophony of sound and chaos, a city street transformed with happy, laughing, dancing people. It is life at the top of the tree, and it is great to be here.
As the parade ends, the observers become participants, joining in the procession and following the bands down to the city's hurricane barrier. Here the parade breaks apart, and bands split off to different stages.
Kaileigh and I are lured by the sound of a familiar tune, and find ourselves in the street in front of the hurricane barrier. The band, Chaotic Noise, which has come in from Seattle Washington, is prancing and gyrating to the music they are making. The crowd joins in. We are all entranced and dancing to their energetic rhythms. They lure us beneath the highway overpass, where the orange street lights cast an eerie glow, but the concrete provides excellent acoustics for the music. We dance, laugh with delight, clap along to rhythms and enjoy the celebratory atmosphere created by the band. There are young children bopping along on the shoulders of parents, and white haired elders getting their grove on. All are enjoying the music together.
Kaileigh, Feather and I all run into people we know, waving and embracing as we go. This is a fine night in Providence, a wonderful place to be alive.
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