This day starts out like any other day. It is a beautiful day, sunny and warm, a great day to be outside. This is the perfect day to take the kids out for a chicken walk. We have four different walks we take at my daycare, each covers different blocks around my neighborhood. Every walk has different highlights, things an adult might pass by and not even notice. One of our walks is the chicken walk.
We almost always head down the hill from my house to start our walks. From there, to our chicken walk, we need to make a chain by holding hands to cross the street together. We pass a wall with flowers, a place to hide and jump out to surprise our friends, the house where Charlie the dog sometimes comes over to say hello.
There is a tree stump on this walk that someone has placed beach finds: sea glass, shells, rocks and pennies. We love to look at them and choose a favorite. We see bugs and flowers, notice changes in neighborhood yards. We find letters from our names on fire hydrants and for sale signs. Every walk is a new twist on an old adventure.
On this day, we stop to say hello to our friends, the chickens. Daisy, Pepper, Cinnamon and Jubilee. Mrs. Walsh, the woman who owns the chickens is home today and invites us into her yard to see them up close. We usually just watch them from the driveway next door.
We spend some time looking in their cage, and Mrs. Walsh lets us feed them oatmeal through the top of their cage. She checks their nest to see if there are any eggs, but there aren't any yet. She holds Cinnamon for us to pet, but we are all too afraid. The best thing is when she poops, just missing Mrs. Walshs' shirt.
We say goodbye and march in a merry band down the street.
As we round the corner back to my house, my belly is feeling a little itchy. I have come to know that this is a sign that it is getting to be time to change my bag. It means the adhesive is getting loose, and I should do it soon. This is not a problem, since the visiting nurse will be by in just a short time.
As I give my belly a little scratch, I feel something wet on my dress. Oh, no, this can't be good.
We make it home, and I go inside to see what has happened. When I lift up my dress, I am horrified. The seal of my bag is almost completely undone, and my bag is about ready to fall off. The stool has crept through the seal, and formed a dark, stinky ring on my belly. This is just gross.
I take the bag off, and try and figure out how I am going to remedy this. I am running low on the sample bags I received, and have recently figured out that one of the boxes contains bags that are sized, all too big for me. I have an order in for more bags, but they haven't come yet. I am sure the visiting nurse will be able to help me cobble something together from what I have, and that the extra samples that Kelli from Coloplast has sent me will come in the mail at any minute.
I clean up the mess carefully, and am sure Kim, the visiting nurse, will be here any minute. It is around the time she said she would be here. I put a paper towel over my stoma and start going though the odds and ends I have left in my sample boxes. If I go slowly enough, the doorbell will ring, and I will have help.
I find a wafer and a snap on ring that are about a quarter of an inch bigger than my stoma. This would leave my skin exposed to stool, and could result in an infection. Recently I was reviewing those infections, and I do not want to get one. Think diaper rash on your belly, basically. This is not a pretty sight.
I find a ring, called a barrier ring. This is a flexible putty ring, that your shape around your stoma to fill in gaps if you have an uneven belly. I figure this should work if you have the wrong size bag as well.
I still don't see any sign of Kim, and I need to get lunch started. I realize I need to figure this change out myself. After I clean and prep my belly, I take the ring out and stretch the center into the shape that will fit over and snug against my stoma. This can go against my stoma because it is pliable and will stretch if there is any swelling. Then I fit the wafer, the part that will adhere to my belly in the two piece pouching system I am using, and stick that over the ring and onto my belly. Once everything is stuck on, there is a ridged ring on both the wafer and the bag, and they click together to seal. When I am done, I am pretty proud of myself for figuring this out all by myself. Not quite Macgyver, but as close as I'll ever come.
I am just finishing with the lunch prep when Kim comes. Her computer had crashed and she needed to reboot it before she coming over. She was impressed with my improvisation, and thinks I can be weaned off her visits. This is good news!
When I had started this whole colostomy experience, it was stressed to me that I might start carrying an extra bag with me, with backup supplies. I did as they suggested, although it all seemed like a bit much. Now I realize how important it is to have that bag. I am so glad I was only taking a walk around the block when this happened, and that all of my supplies were close by. It really could have been a disaster.
The Haircut
I haven't had my haircut since last October. I had cancelled my appointment and never made another, and sometimes, that is just how it goes. The only days I seem to remember to call the salon are the two they are closed. I was thinking I would try to make it through the summer
and grow my hair long enough for locks of love after the first few
months passed. But, greasy hair was driving me crazy. Since showering is such a
project these days, I have more sponge baths, and less shampooing than I
would like. This is especially annoying when you wake up with night
sweats just drenched, and hair that looks and feels gross in the morning.
Leslie and I have months of stuff to catch up on. Leslie has been cutting my hair for close to twenty years, so we have been through a lot, in dribs and drabs of visits once every six to eight weeks, with occasional missed appointments that stretch for months. I am glad we have this time to catch up, and really, really happy to have my hair cut.
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...
Wednesday, August 6, 2014
Tuesday, August 5, 2014
July 7, 2014
Everything seems to be going on a normal course today. I am looking forward to the installation of my port tomorrow, looking forward to not having to remember just before crawling into bed that I have forgotten to have someone flush my lines for me. This seems to happen too often.
I am buoyed by by the overwhelming response to my blog, which I posted yesterday. It feels good to be able to let people know what has been going on in my life. It is helpful to write it all down and review what has happened to me. I think it is important that people realize this is a thing that can happen in a persons life, and that although it is a difficult time, it is not an impossible time. Things will happen, time will pass, life will change and morph into something else. I am unafraid, and looking forward to seeing how all this will turn out.
I have learned so much already and hope I have become a more thoughtful person because of the love and caring of so many around me. I am blown away by the support I have in my community, my village. It truly is a village made of love, warmth, kindness and compassion. It is the most amazing place to live and I am blessed and grateful to be a part of it.
July 8th
Last night there was a mysterious call on Steven's phone. It was garbled and cut off, but it may have said that my appointment for today was cancelled. The call came after regular hospital business hours, so trying to speak to anyone about what the message was impossible. Just to be on the safe side, I don't eat or drink anything after midnight, and try calling the hospital at seven in the morning. My appointment is at eight thirty. At seven forty five, I find out that I will not be getting a port this morning. I am very disappointed. Ayla was going to work for me today, and this is really the easiest day to have it done.
Ayla comes over shortly after I get the call. She looks for something to eat, and is not disappointed at the free day ahead of her.
I go to knitting this evening, even though I am a little tired. I don't get much done, but it is nice to be in the company of such nice people.
I am buoyed by by the overwhelming response to my blog, which I posted yesterday. It feels good to be able to let people know what has been going on in my life. It is helpful to write it all down and review what has happened to me. I think it is important that people realize this is a thing that can happen in a persons life, and that although it is a difficult time, it is not an impossible time. Things will happen, time will pass, life will change and morph into something else. I am unafraid, and looking forward to seeing how all this will turn out.
I have learned so much already and hope I have become a more thoughtful person because of the love and caring of so many around me. I am blown away by the support I have in my community, my village. It truly is a village made of love, warmth, kindness and compassion. It is the most amazing place to live and I am blessed and grateful to be a part of it.
July 8th
Last night there was a mysterious call on Steven's phone. It was garbled and cut off, but it may have said that my appointment for today was cancelled. The call came after regular hospital business hours, so trying to speak to anyone about what the message was impossible. Just to be on the safe side, I don't eat or drink anything after midnight, and try calling the hospital at seven in the morning. My appointment is at eight thirty. At seven forty five, I find out that I will not be getting a port this morning. I am very disappointed. Ayla was going to work for me today, and this is really the easiest day to have it done.
Ayla comes over shortly after I get the call. She looks for something to eat, and is not disappointed at the free day ahead of her.
I go to knitting this evening, even though I am a little tired. I don't get much done, but it is nice to be in the company of such nice people.
Monday, August 4, 2014
A Holiday Weekend
July 4th
After feeling so tired last night, I wake up feeling energized. This seems to be the pattern to my days, energy, exhaustion, sleep, energy. It almost feels like normal, but the degrees are different. The energy goes away much more quickly than I would like it to.
I try to figure out the weather. It looks like we will be getting some rain from Hurricane Arthur, later, rather than sooner. I can get some gardening in.
Things are a mess out in my garden. I haven't trimmed or weeded in a couple of weeks, and I never really got started out there. It always seemed too cool, or rainy, or I was too busy to get it done. It is late in the season, but today I will start in earnest. I have the next three days off from work, I am hoping to get a few things done.
I have some annoying problems in my yard. I have several small gardens that I need to be mowed around. Since I have a reel mower, I trim around these gardens with clippers, by hand. It is quiet meditative work, stopping the gentle clipping of blades to pull weeds. It is by choice, of course. I could buy a weed whacker, but I can't stand the noise or the smell. It makes a calm, thoughtful job into a crazy, noisy, frenzy of a job. I like the quiet better even though I could get it done faster.
I make a small dent in what I hope to do before the rains arrive. I quickly pick up my tools, put them away and get into the house. No sooner do I get in, than the rain stops. I should have stayed out longer.
Later in the day, when the rain really starts to fall, we drive over to my brother and sister in law's house for a cook in. Their house is large and easily fits many people. The food and the company here are always exceptional.
It is in this house that I realize how important it is to be seen when things are amok in your life. You can email or call people on the phone, but nothing beats seeing someone in person. It is reassuring, and calming for people to be able to hug you, and look at you, and know that you are doing okay. Things can still be scary and uncertain, but at least in this moment, at this time, things are okay. It is not something you can always do, sometimes you really can't bear to get out, to be with others, to expend your energy in this way. If you can though, the rewards are great.
Saturday, July 5th
Up with the birds today to garden. I need to take some Miralax today, since I still have had no bag action. It seems to kick in while I am gardening, in the form of short, sharp cramps. Some of them take my breath away. It seems to be helping to move things along though.
Once Kaileigh is awake, we head off to Johnston. I had noticed a nursery on my way to Dr. Lentrichia's office and want to check it out. I find some cherry tomato plants, and buy several. The daycare kids love to eat them fresh off the plant, so we need many. It turns out that the plants are all half off. I guess sometimes it pays to be a little behind!
It is lunchtime, so we stop into a little pizza place hoping to get a calzone. There were calzones at the party yesterday which I didn't eat, so of course that is all I can think of today. They are not making them fresh today, so we get a chicken parm instead. I also get a soda. I am curious about how a soda will react with my newly routed digestive system.
We hit one of my favorite nurseries on Scituate Ave. in Western Cranston, The Good Earth. Things are pretty picked over, so I don't find any plants, but I do need some mulch. One of the owners helps us load it into the car. This is enough plant shopping for me today.
After a nap some friends, Valerie and Alex stop by with their boys. I haven't seen them in weeks, and I miss them. We catch up on all of the current events in our lives, and they get ready to go off to see the fireworks that were postponed from the Fourth.
I contemplate going to India Point Park to see the display, but I am too tired. I need rest more than fireworks. I lay in bed and listen to them as I drift off to sleep.
Sunday, July 6th
Today is the first day of official summer services at 1st UU, and I have the responsibility of getting childcare for the summer. I have two good providers lined up, but only one can make it today, so I am going to help out. I have a feeling there won't be too many children today, which turns out to be right. Two boys come, regulars to our program. They are happy to be given so much attention from two adults, and although I am feeling a little foggy, I do fine.
I am trying to be aware of side effects, and today marks what is often a bad day for chemo patients. Aside from being low on energy, I feel like I am doing fine.
Kaileigh picks me up when church is over and we head out to get more plants. My rule is that I don't buy more plants until what I have is planted, and I haven't planted anything yet. This year is a special year though, a year to break the rules. And besides, Kaileigh will be going back to Ithaca tomorrow, and I probably will not get out again.
We head out to a little place called Stamp Farms that we noticed on our way home yesterday. It is tucked away between an apartment complex and some office parks on Comstock Rd. in Cranston. It is crammed with plants, which are not on sale yet. They are beautiful and healthy, and I find some colorful flowers to put in planters at the end of the driveway. I love the bright colors, and so will the kids. I debate about a hanging plant, a fuschia. I love the delicate blooms of this plant, they look like exotic Chinese lanterns. I am not sure that I want to pay the full price though and leave without it.
Our next stop is Confreda Greenhouse and Farms. We have success filling up the car with flowers peppers, basil and herbs, at half the price it would have been had I been on top of things. By the time we are done at Confreda's I am tired though.
Over the course of this trip, my bag has shown me the new meaning of gas bag. It has filled with gas, and is now like a balloon on my belly. I open the windows and press the air out. This is not pleasant, but I have no choice. If I don't empty it, I am afraid it will pop. Is this the soda I had yesterday? It seems unlikely, but I don't know what else I have eaten that would cause so much gas.
Although I am tired, I know I will regret it if I don't get that fuschia, so we stop back at Stamp Farm to pick it up. The car is full of plants now, there will be plenty to do in the coming days.
After a nap, my sisters stop by to visit. Jill will be leaving to go back home to Ohio tomorrow, this is my last chance to see her and my nephew for a while. We sit and talk, but the plants are calling to me outside. We take my nephew outside to play, and I start setting things into the herb garden just outside the back door. Sara decides to put some tomatoes in for me. By the time they leave, Sara and I have put in many of the plants. This has been a pleasant and productive visit!
I have made it through what was predicted to be my bad day. Aside from a few cramps and my gas problem, it doesn't seem to be too awful. I am hoping things continue on this way.
After feeling so tired last night, I wake up feeling energized. This seems to be the pattern to my days, energy, exhaustion, sleep, energy. It almost feels like normal, but the degrees are different. The energy goes away much more quickly than I would like it to.
I try to figure out the weather. It looks like we will be getting some rain from Hurricane Arthur, later, rather than sooner. I can get some gardening in.
Things are a mess out in my garden. I haven't trimmed or weeded in a couple of weeks, and I never really got started out there. It always seemed too cool, or rainy, or I was too busy to get it done. It is late in the season, but today I will start in earnest. I have the next three days off from work, I am hoping to get a few things done.
I have some annoying problems in my yard. I have several small gardens that I need to be mowed around. Since I have a reel mower, I trim around these gardens with clippers, by hand. It is quiet meditative work, stopping the gentle clipping of blades to pull weeds. It is by choice, of course. I could buy a weed whacker, but I can't stand the noise or the smell. It makes a calm, thoughtful job into a crazy, noisy, frenzy of a job. I like the quiet better even though I could get it done faster.
I make a small dent in what I hope to do before the rains arrive. I quickly pick up my tools, put them away and get into the house. No sooner do I get in, than the rain stops. I should have stayed out longer.
Later in the day, when the rain really starts to fall, we drive over to my brother and sister in law's house for a cook in. Their house is large and easily fits many people. The food and the company here are always exceptional.
It is in this house that I realize how important it is to be seen when things are amok in your life. You can email or call people on the phone, but nothing beats seeing someone in person. It is reassuring, and calming for people to be able to hug you, and look at you, and know that you are doing okay. Things can still be scary and uncertain, but at least in this moment, at this time, things are okay. It is not something you can always do, sometimes you really can't bear to get out, to be with others, to expend your energy in this way. If you can though, the rewards are great.
Saturday, July 5th
Up with the birds today to garden. I need to take some Miralax today, since I still have had no bag action. It seems to kick in while I am gardening, in the form of short, sharp cramps. Some of them take my breath away. It seems to be helping to move things along though.
Once Kaileigh is awake, we head off to Johnston. I had noticed a nursery on my way to Dr. Lentrichia's office and want to check it out. I find some cherry tomato plants, and buy several. The daycare kids love to eat them fresh off the plant, so we need many. It turns out that the plants are all half off. I guess sometimes it pays to be a little behind!
It is lunchtime, so we stop into a little pizza place hoping to get a calzone. There were calzones at the party yesterday which I didn't eat, so of course that is all I can think of today. They are not making them fresh today, so we get a chicken parm instead. I also get a soda. I am curious about how a soda will react with my newly routed digestive system.
We hit one of my favorite nurseries on Scituate Ave. in Western Cranston, The Good Earth. Things are pretty picked over, so I don't find any plants, but I do need some mulch. One of the owners helps us load it into the car. This is enough plant shopping for me today.
After a nap some friends, Valerie and Alex stop by with their boys. I haven't seen them in weeks, and I miss them. We catch up on all of the current events in our lives, and they get ready to go off to see the fireworks that were postponed from the Fourth.
I contemplate going to India Point Park to see the display, but I am too tired. I need rest more than fireworks. I lay in bed and listen to them as I drift off to sleep.
Sunday, July 6th
Today is the first day of official summer services at 1st UU, and I have the responsibility of getting childcare for the summer. I have two good providers lined up, but only one can make it today, so I am going to help out. I have a feeling there won't be too many children today, which turns out to be right. Two boys come, regulars to our program. They are happy to be given so much attention from two adults, and although I am feeling a little foggy, I do fine.
I am trying to be aware of side effects, and today marks what is often a bad day for chemo patients. Aside from being low on energy, I feel like I am doing fine.
Kaileigh picks me up when church is over and we head out to get more plants. My rule is that I don't buy more plants until what I have is planted, and I haven't planted anything yet. This year is a special year though, a year to break the rules. And besides, Kaileigh will be going back to Ithaca tomorrow, and I probably will not get out again.
We head out to a little place called Stamp Farms that we noticed on our way home yesterday. It is tucked away between an apartment complex and some office parks on Comstock Rd. in Cranston. It is crammed with plants, which are not on sale yet. They are beautiful and healthy, and I find some colorful flowers to put in planters at the end of the driveway. I love the bright colors, and so will the kids. I debate about a hanging plant, a fuschia. I love the delicate blooms of this plant, they look like exotic Chinese lanterns. I am not sure that I want to pay the full price though and leave without it.
Our next stop is Confreda Greenhouse and Farms. We have success filling up the car with flowers peppers, basil and herbs, at half the price it would have been had I been on top of things. By the time we are done at Confreda's I am tired though.
Over the course of this trip, my bag has shown me the new meaning of gas bag. It has filled with gas, and is now like a balloon on my belly. I open the windows and press the air out. This is not pleasant, but I have no choice. If I don't empty it, I am afraid it will pop. Is this the soda I had yesterday? It seems unlikely, but I don't know what else I have eaten that would cause so much gas.
Although I am tired, I know I will regret it if I don't get that fuschia, so we stop back at Stamp Farm to pick it up. The car is full of plants now, there will be plenty to do in the coming days.
After a nap, my sisters stop by to visit. Jill will be leaving to go back home to Ohio tomorrow, this is my last chance to see her and my nephew for a while. We sit and talk, but the plants are calling to me outside. We take my nephew outside to play, and I start setting things into the herb garden just outside the back door. Sara decides to put some tomatoes in for me. By the time they leave, Sara and I have put in many of the plants. This has been a pleasant and productive visit!
I have made it through what was predicted to be my bad day. Aside from a few cramps and my gas problem, it doesn't seem to be too awful. I am hoping things continue on this way.
Sunday, August 3, 2014
Figuring Out Chemo
July 2, 2014
I wake up this morning and feel amazing. I am hungry and I have energy. This is a sign that my body is getting better. I have a little nausea, but as soon as I feel it, I take a compazile pill, an anti nausea medication, and I feel fine again.
Since I have this pump today, which is stored in a fanny pack that goes around my waist, Sara is going to do naps today. I am not sure how to juggle a child in my arms so that I will not tangle them in my lines or knock off my two bags.
I am not happy about this fanny pack thing, I already have a bag on my waist, and I am nervous that the kids might get tangled in the line that runs from my arm to my pack. When we are reading stories, I can't easily have a child on my lap, because there are too many things in the way. Even sitting buy my side, the kids wiggle into my pack and play with the line.
Kaileigh has gone off on a shopping trip to Savers for me. She is looking for one of those backpack handbags that were in style a few years ago. We figured she should be able to find one there. She is also looking for a few blouses that I will be able to put a pump through the sleeve of while I have to have the picc line arrangement on my arm. While I am on the chemo and the nausea meds, my skin will be very sensitive to the sun. I need a light, wide sleeved shirt I can get my pump through easily, to keep me both warm and covered from the sun. It also has to be long to cover my bag.
Kaileigh returns and has been successful. She has found a small, purple back back that will hold the pump and take the lines over my shoulder keeping them out of the way of the kids. I will look a little like Dora the Explorer with my purple back pack. She has also found a few blouses that will work very well with hiding my bag, my lines and keeping me out of the sun.
The visiting nurse comes to show me how to flush my picc line, something which must be done every day. The nurse doesn't have an extension allowing me to do it myself, so Kaileigh learns how to do it for me. The two lines I have each need to be flushed out with saline and then heparin. It is not a difficult process, there are prefilled syringes that twist onto the end of my picc lines and the solution is then pushed in. It just takes a little time. The ends of the lines need to be cleaned with alcohol swabs, the saline solution needs to be pushed up so there is no air in the line, the syringe is attached, the saline is pushed in, and the same needs to be done with the heparin. Then the cap is cleaned and replaced on the end of the line. After you clean up all the plastic caps and empty syringes you have used you are done. It all takes maybe ten minutes.
After the kids all leave, Ayla and I are taking Kaileigh to get her fox tattoo. She has chosen to get the black and white fox on her shoulder. Everything seems to go pretty quickly, and Kaileigh is not bothered by it. When she is done, it looks great.
Steve makes a salad and has heated up the lasagne that Brett brought over yesterday. It is delicious.
After dinner I am fried and ready for bed. I take my temperature, as has been my habit at bedtime since I came home from the hospital. It is up to one hundred, so I take a Tylenol. Two hours later, it has not gone down but up to one hundred and one point four. This is the magic number the people at Fain 3 assigned me for calling in to check on things. It is after ten, so I need to call the physician on call. He calls me back right away. After hearing about my history, he decides that it is nothing to be alarmed about, and tells me to take another Tylenol. After an hour, my temp is down ever so slightly.
It is very hot and hard to sleep, but eventually I get there. When I wake in the morning, my fever is gone.
July3rd
I get up at five, and veg out in front of the news for a few minutes. Hurricane Arthur is going to come up the coast and change everyone's Fourth of July plans.
Today I am going solo at daycare. Sara wants to go to Gloucester, Massachusetts to see their Ancients and Horribles parade tonight, and maybe even fire works. This is the parade that we grew up with in my family. We would spend much of our summer at my grandparents house on the Annisquam river in Gloucester. Every third of July, when the town has their annual parade, we would have american chop suey for dinner and head out to the parade. We would park in the same parking lot and sit by the same wall in front of the grocery store every year. The house is no longer in the family, but Sara still loves to drive out to see the parade. She goes with our sister Jill, and her son Brian.
There are only three children coming today. One of them arrives at seven, and is an older alum who is almost ten. We play games and make ginger stars to celebrate the coming holiday. We are putting the finishing touches on with m&m's, red hots, and frosting when the other two children arrive. They eat a cookie and some candy as they watch us finish. Shortly after we are done with the cookies, her mom comes to pick her up. She is leaving for camp in a few days, so we keep a few cookies for the little kids and pack all the others up to be taken to camp and shared with new friends.
Once the baking is reasonably cleaned up, I take my two girls for a walk. We stop to visit to visit our friend Deborah, who lives down the street from my house. She shows us her garden, lets us play with her cat, decorate her driveway with chalk drawings, and shows us the poppies that are blooming in her front yard. It is always a treat when we get to visit with her.
We poke along and make it back to the house by lunch time. We enjoy the last of Brett's lasagne, peas, watermelon and a ginger star.
One of the girls is very tired, so Kaileigh and Josh entertain in the kitchen, while I coax her to sleep with a song and some gentle strokes on her head.
Josh is going to read stories today, and is disappointed when a mom appears to take away his audience. He reads to Kaileigh instead.
I am feeling a little tired, so I leave my napper under the watchful eyes of Kaileigh and Josh, and go off to rest myself. I get maybe forty five minutes when the phone rings. It is the hospital checking to see how I feel. I start telling them about the chemo, and realize that they are calling about the picc line. Things can be so confusing! I try to go back to sleep and the phone rings again. Annoyed, I decide it is time to get up. As I quietly creep downstairs I notice my sleeper is waking up too.
I give her a snack, juice and a cookie she didn't have after lunch. We go to draw and her mom comes to pick her up. This is perfect timing, as this is the time I need to leave to get disconnected from my chemo pump.
Normally, I will be getting disconnected at home, but the doctor wants me to get an iron infusion today as well. My iron level has been low, and he wants to bring it up. He didn't want to give it to me with the other medicines, because he wanted to give my body time to adjust to those first.
We go to Fain 3 again, and today my nurse is Cassie. She is tall and beautiful and wears a hawaiian print scrub top. She is a good listener, paying attention to and answering my questions and concerns. She lets the fluorouracil finish running through my pump, and gets ready to hook me up for my next infusion, saline and iron.
I haven't had any action in my bag since yesterday morning, so I am concerned about getting this iron. One of the side effects is constipation, and my belly is already feeling hard. She checks and tells me to take some Miralax. The iron could also have the opposite effect, so I need to be careful. If nothing has happened by tomorrow, I will take the Miralax.
We discuss getting my port put in next week, although I get the feeling she would like me to wait until my next chemo session. I am afraid that if I wait, the same thing could happen with my temperature, so I would rather do it sooner that later. She makes an appointment for me for Tuesday.
Today I am there for just three hours, an improvement over Tuesday. As I sit there I grow hungry and what I really want is a cheeseburger from Five Guys. We drive to Lincoln to get one, and I eat the whole thing!
I need some things from the pharmacy, but suddenly, I am dead tired. I have hit a wall. I need to go home and get some sleep, so that is what I do.
I wake up this morning and feel amazing. I am hungry and I have energy. This is a sign that my body is getting better. I have a little nausea, but as soon as I feel it, I take a compazile pill, an anti nausea medication, and I feel fine again.
Since I have this pump today, which is stored in a fanny pack that goes around my waist, Sara is going to do naps today. I am not sure how to juggle a child in my arms so that I will not tangle them in my lines or knock off my two bags.
I am not happy about this fanny pack thing, I already have a bag on my waist, and I am nervous that the kids might get tangled in the line that runs from my arm to my pack. When we are reading stories, I can't easily have a child on my lap, because there are too many things in the way. Even sitting buy my side, the kids wiggle into my pack and play with the line.
Kaileigh has gone off on a shopping trip to Savers for me. She is looking for one of those backpack handbags that were in style a few years ago. We figured she should be able to find one there. She is also looking for a few blouses that I will be able to put a pump through the sleeve of while I have to have the picc line arrangement on my arm. While I am on the chemo and the nausea meds, my skin will be very sensitive to the sun. I need a light, wide sleeved shirt I can get my pump through easily, to keep me both warm and covered from the sun. It also has to be long to cover my bag.
Kaileigh returns and has been successful. She has found a small, purple back back that will hold the pump and take the lines over my shoulder keeping them out of the way of the kids. I will look a little like Dora the Explorer with my purple back pack. She has also found a few blouses that will work very well with hiding my bag, my lines and keeping me out of the sun.
The visiting nurse comes to show me how to flush my picc line, something which must be done every day. The nurse doesn't have an extension allowing me to do it myself, so Kaileigh learns how to do it for me. The two lines I have each need to be flushed out with saline and then heparin. It is not a difficult process, there are prefilled syringes that twist onto the end of my picc lines and the solution is then pushed in. It just takes a little time. The ends of the lines need to be cleaned with alcohol swabs, the saline solution needs to be pushed up so there is no air in the line, the syringe is attached, the saline is pushed in, and the same needs to be done with the heparin. Then the cap is cleaned and replaced on the end of the line. After you clean up all the plastic caps and empty syringes you have used you are done. It all takes maybe ten minutes.
After the kids all leave, Ayla and I are taking Kaileigh to get her fox tattoo. She has chosen to get the black and white fox on her shoulder. Everything seems to go pretty quickly, and Kaileigh is not bothered by it. When she is done, it looks great.
Steve makes a salad and has heated up the lasagne that Brett brought over yesterday. It is delicious.
After dinner I am fried and ready for bed. I take my temperature, as has been my habit at bedtime since I came home from the hospital. It is up to one hundred, so I take a Tylenol. Two hours later, it has not gone down but up to one hundred and one point four. This is the magic number the people at Fain 3 assigned me for calling in to check on things. It is after ten, so I need to call the physician on call. He calls me back right away. After hearing about my history, he decides that it is nothing to be alarmed about, and tells me to take another Tylenol. After an hour, my temp is down ever so slightly.
It is very hot and hard to sleep, but eventually I get there. When I wake in the morning, my fever is gone.
July3rd
I get up at five, and veg out in front of the news for a few minutes. Hurricane Arthur is going to come up the coast and change everyone's Fourth of July plans.
Today I am going solo at daycare. Sara wants to go to Gloucester, Massachusetts to see their Ancients and Horribles parade tonight, and maybe even fire works. This is the parade that we grew up with in my family. We would spend much of our summer at my grandparents house on the Annisquam river in Gloucester. Every third of July, when the town has their annual parade, we would have american chop suey for dinner and head out to the parade. We would park in the same parking lot and sit by the same wall in front of the grocery store every year. The house is no longer in the family, but Sara still loves to drive out to see the parade. She goes with our sister Jill, and her son Brian.
There are only three children coming today. One of them arrives at seven, and is an older alum who is almost ten. We play games and make ginger stars to celebrate the coming holiday. We are putting the finishing touches on with m&m's, red hots, and frosting when the other two children arrive. They eat a cookie and some candy as they watch us finish. Shortly after we are done with the cookies, her mom comes to pick her up. She is leaving for camp in a few days, so we keep a few cookies for the little kids and pack all the others up to be taken to camp and shared with new friends.
Once the baking is reasonably cleaned up, I take my two girls for a walk. We stop to visit to visit our friend Deborah, who lives down the street from my house. She shows us her garden, lets us play with her cat, decorate her driveway with chalk drawings, and shows us the poppies that are blooming in her front yard. It is always a treat when we get to visit with her.
We poke along and make it back to the house by lunch time. We enjoy the last of Brett's lasagne, peas, watermelon and a ginger star.
One of the girls is very tired, so Kaileigh and Josh entertain in the kitchen, while I coax her to sleep with a song and some gentle strokes on her head.
Josh is going to read stories today, and is disappointed when a mom appears to take away his audience. He reads to Kaileigh instead.
I am feeling a little tired, so I leave my napper under the watchful eyes of Kaileigh and Josh, and go off to rest myself. I get maybe forty five minutes when the phone rings. It is the hospital checking to see how I feel. I start telling them about the chemo, and realize that they are calling about the picc line. Things can be so confusing! I try to go back to sleep and the phone rings again. Annoyed, I decide it is time to get up. As I quietly creep downstairs I notice my sleeper is waking up too.
I give her a snack, juice and a cookie she didn't have after lunch. We go to draw and her mom comes to pick her up. This is perfect timing, as this is the time I need to leave to get disconnected from my chemo pump.
Normally, I will be getting disconnected at home, but the doctor wants me to get an iron infusion today as well. My iron level has been low, and he wants to bring it up. He didn't want to give it to me with the other medicines, because he wanted to give my body time to adjust to those first.
We go to Fain 3 again, and today my nurse is Cassie. She is tall and beautiful and wears a hawaiian print scrub top. She is a good listener, paying attention to and answering my questions and concerns. She lets the fluorouracil finish running through my pump, and gets ready to hook me up for my next infusion, saline and iron.
I haven't had any action in my bag since yesterday morning, so I am concerned about getting this iron. One of the side effects is constipation, and my belly is already feeling hard. She checks and tells me to take some Miralax. The iron could also have the opposite effect, so I need to be careful. If nothing has happened by tomorrow, I will take the Miralax.
We discuss getting my port put in next week, although I get the feeling she would like me to wait until my next chemo session. I am afraid that if I wait, the same thing could happen with my temperature, so I would rather do it sooner that later. She makes an appointment for me for Tuesday.
Today I am there for just three hours, an improvement over Tuesday. As I sit there I grow hungry and what I really want is a cheeseburger from Five Guys. We drive to Lincoln to get one, and I eat the whole thing!
I need some things from the pharmacy, but suddenly, I am dead tired. I have hit a wall. I need to go home and get some sleep, so that is what I do.
Saturday, August 2, 2014
Port Drama
July 1, 2014
Finally it is here, my first day of chemo.
I still have a slight fever when I wake up at five, but it goes away as I get going. I realize I might not be able to take a shower for a few days, so I wrap my bag in saran wrap and hop on in. I dress and check my notebook for prep protocol. No food or drink after midnight. Darn! Did I mention that I went to bed at 7:30 last night? The last drink I had was a sip of water to wash down the Tylenol.
Just as I am getting ready to leave, Brett stops by with some flowers and a lasagne. This will make a delicious dinner tonight.
Kaileigh, Steve and I make the long drive to the hospital. We park and go into the main building, where they will put in my port. We are processed in quickly, and I get into the prep room early. Things are sailing along. I need to change into a johnny and some slippers. Of course I am cold, so the nurse brings me one of those heated blankets. Ohhhh! It feels so good.
All of the pertinent information is taken, my name and birth date recited to everyone who enters the room. If Steve or Kaileigh didn't know my birth date, they know it now.
Nurse Kate takes my vitals. I have a fever of one hundred and one. Of course she is not happy with this. She realizes she has just wrapped me in a warm blanket, and decides to wait and take it again in a little while. It goes down to one hundred. I explain to her that since I have had my ostomy operation I have a fever every night around bedtime. Sometimes I have a low grade fever during the day. I don't mention that normally my temp runs low.
A physicians assistant, Laura, comes in to explain the port procedure to me. The port is a little self healing button that will be inserted under my skin so that the needle for the medication they need to give me can be inserted easily. It is easy to access to take blood and administer medication, and will go though sturdier, internal veins. It will have a line that runs into my jugular vein, so it will look like I have a vein running from the button which will be on my upper right chest, to the base of my neck. She tells me what will happen and how I will feel. I will be awake and aware for the operation, but I will be given a drug that will make me not care. She and the nurse will talk to me throughout the procedure, to let me know what is going on.
She signs papers, I sign papers. Kate comes back in to take my temp. It is still at one hundred. Laura is not pleased. She goes to talk with Dr. Safran. They are worried about an infection. I tell them about my fever problems at Roger Williams Hospital, but they don't have paperwork on that, so it is not helpful. I explain that I have a fever every night, and a low grade one into most days.
Together the Doctor and the physicians assistant decide that instead of a port, I should get a picc line, a peripherally inserted central catheter, in my left arm. This is a small double ended IV tube that will go into my arm, and into a vein that runs beside my heart. They will insert it while I am awake, and with no pain medication. Once this is agreed upon, there is more paper work and more signatures required.
I am wheeled into the room where they will insert the picc line. There are large machines in this room, with one they will be using to do a live x-ray of me while they are inserting the line. It will be above my face and very close, but not touching it. The PA initials the arm where the picc line is to go in. I scoot over from my transport bed to the table beneath the big round screen. A long plexiglass board is slid beneath me, which extends out at my shoulder so I can rest my left arm on it. They cover me with a plastic and paper blanket to keep me warm. Thank goodness, it is cold in there! The nurses put on their lead armor. These are dresses made of lead. They are all different and colorful, red, blue, one is polka dotted. They look kind of anime and cute. They cover their faces with paper or plastic sheilds, so that it is getting difficult to understand what they are saying. I am asked once again for my name and birthdate. My bracelet is checked as well as the paperwork to be sure the information matches. I am asked why I am in this room. The nurses check and double check everything.
I am not sure of the exact order here, but these things all happened at some point. My upper arm is washed with a blue liquid, which turns my arm, chest and neck blue. The PA and the ultra sound technician look at my veins to select the route they will take up my arm, around my arm pit, over and into a vein running beside my heart. Once a vein is selected they start the operation. They numb the area on my arm where they will be inserting the tube. I feel a sharp pinch, and after that I am left to my imagination. Can I really feel the tube being pushed into my vein? I can't ever imagine how they are doing this. There is pushing and pulling on my upper arm and skin.
At one point I get a stabbing pain. I try not to jump, and tell Laura as calmly and urgently as possible. "That hurt a lot, and now my hand is tingling." Somehow, I think she knew this. She apologizes and asks if it still hurts. I imagine that she was going around the curve near my arm pit and jabbed the vein. How do they even get that tube to turn, I wonder. I really don't want to know or have it explained, I just want this to be over with. I am feeling very agitated, but force myself to lay there calmly, trying to figure out where they are in my body. Finally, we are done.
Katie wheels me back to recovery. Before we started all this, she had promised me the best English muffin I have ever tasted. She asks what I would like on it, and offers peanut butter, jelly or butter. I ask for jelly and butter.
After I gobble up my muffin, I get dressed and walk over to get an x-ray. They are still trying to figure out the source of my fever, and want to rule out pneumonia. I get the x-ray standing up, something I have never done before.
I am brought back to the room I was in, and wait for a wheel chair to take me over to Fain 3, which is across Fifth Street. As I leave, Kate and Laura bid me farewell. They know I will be back within the next two weeks to have the picc line removed and a port put in.
We wind our way though the hospital, and take an elevator down to the basement. From here there is a tunnel that goes under the street, which I never thought or knew about. We take the elevator up to Fain 3 and I sign in.
I am taken to the Mega suite today. This section of the hospital has a great name, like it is something really big. It is named for the mother of one of the nurses I met during my training session. They donated money in honor of her when they were building the new wing, and her last name was Mega.
These treatment rooms are set up like the rooms I saw on my first visit. It is very busy because of the upcoming Fourth of July Holiday, and they need to utilize more rooms.
We have the luck to be in this wing on piano tuning day. At first we think someone is warming up very badly. Kaileigh, Steven and I joke about it and wonder when if will ever get started. When I hear them playing very out of tune intervals, I figure out that it is being tuned. This continues on for the entire time we are there.
A nurse introduces herself and I immediately forget her name. She takes my vitals again, I still have that fever. This leads to another discussion with Dr. Safran. When she returns, she has blankets, IV meds, a urine sample container and blood sample bottles. While that nurse was out gathering supplies, a phlebotomist comes to draw blood from my right arm. I recognize the hot sauce bottles from the tests they did at Roger Williams Hospital. They need to heat up my blood to look for infection.
They start me on a test run with my picc line. They will run saline through my line to make sure it works. When it is started, I get that alcohol taste in my mouth again. I had thought the foul taste must be from medicine, but it is from plain old saline solution. It is such a weird sensation. The line is running and will go for about an hour.
I need to pee, which is fortunate, since they want a urine sample from me. I push my IV tree into the bathroom to get the job done. These samples are pretty complicated to get if you are a female. First you have to wipe with a special cleaning wipe, front to back one side, front to back the other side, before you can pee. You need to attempt to catch the pee in the small cup without getting it on your hands or all over the cup. Once that is done, you need to find a place to put the cup while you wipe, hold up your dress, pull up your underwear, pull up pants, straighten dress, trying all the while not to get caught up in any of the lines hanging off my arm. Then, there is the mess to clean up from the cup, because of course the pee doesn't go into the cup right away. The trash can lid opposite the toilet is the most convenient place to put it at first, so that needs to be cleaned, and then, the edge of the sink where it ended up while I cleaned the trash can lid. I wish a paper towed had occurred to me. I wipe off the bottle, wash my hands, dry my hands, dry off the bottle, wipe down the sink, and I'm done. Did I mention there is a big sign on the door which says "DO NOT LOCK THIS DOOR!"? All this while worrying that someone will forget to knock on the door, which of course, someone does. How does life get so complicated?
When I return to my pod, they draw some more hot sauce blood from me before I am hooked up to my first two doses of medicine.
We are all very hungry. I have been given some cookies and cranberry juice from the snack cart, but this is only a tease. I have had only that English muffin and a juice since eating very little for dinner last night. Kaileigh orders a Cajun chicken pizza from Pizza Pie-er for lunch.
Kaileigh picks up the pizza. I am not sure I can eat it, I had read in that big binder I was given that you should not eat during your treatment. I check with an aid, and she assures me that I can.
Since I thought before all this started I might have a gluten allergy, I have not had pizza in a couple of months. It tastes so good, I don't even mind that it makes my mouth raw.
I get another two bags of medicine. As the day wears on, the piano is becoming more and more in tune.
Before they give me my chemo, I need to watch a video about the pump I will wear for 46 hours to receive the medicine. It explains how it works and what to do if it should malfunction in any way. After the 46 hours are up, a visiting nurse will come to my house to unhook it for me. This all has to be done very carefully, since the chemo is a biohazard.
When they hook up the pump, they have to run through a test dose to make sure I don't have a reaction and that everything goes through okay. At five forty five, I can finally go home. I feel very good after my day in the hospital, I didn't even need a nap today. True, I sat in a chair all day, so I shouldn't be very tired. I am relieved to have started my treatment, and glad to be heading home.
Another dressing challenge has come my way. Now besides trying to figure out how to best hide my ostomy bag, I need to figure out how to get the lines from my pump through my clothes and onto my body without making a tangled mess. Complicated indeed!
Finally it is here, my first day of chemo.
I still have a slight fever when I wake up at five, but it goes away as I get going. I realize I might not be able to take a shower for a few days, so I wrap my bag in saran wrap and hop on in. I dress and check my notebook for prep protocol. No food or drink after midnight. Darn! Did I mention that I went to bed at 7:30 last night? The last drink I had was a sip of water to wash down the Tylenol.
Just as I am getting ready to leave, Brett stops by with some flowers and a lasagne. This will make a delicious dinner tonight.
Kaileigh, Steve and I make the long drive to the hospital. We park and go into the main building, where they will put in my port. We are processed in quickly, and I get into the prep room early. Things are sailing along. I need to change into a johnny and some slippers. Of course I am cold, so the nurse brings me one of those heated blankets. Ohhhh! It feels so good.
All of the pertinent information is taken, my name and birth date recited to everyone who enters the room. If Steve or Kaileigh didn't know my birth date, they know it now.
Nurse Kate takes my vitals. I have a fever of one hundred and one. Of course she is not happy with this. She realizes she has just wrapped me in a warm blanket, and decides to wait and take it again in a little while. It goes down to one hundred. I explain to her that since I have had my ostomy operation I have a fever every night around bedtime. Sometimes I have a low grade fever during the day. I don't mention that normally my temp runs low.
A physicians assistant, Laura, comes in to explain the port procedure to me. The port is a little self healing button that will be inserted under my skin so that the needle for the medication they need to give me can be inserted easily. It is easy to access to take blood and administer medication, and will go though sturdier, internal veins. It will have a line that runs into my jugular vein, so it will look like I have a vein running from the button which will be on my upper right chest, to the base of my neck. She tells me what will happen and how I will feel. I will be awake and aware for the operation, but I will be given a drug that will make me not care. She and the nurse will talk to me throughout the procedure, to let me know what is going on.
She signs papers, I sign papers. Kate comes back in to take my temp. It is still at one hundred. Laura is not pleased. She goes to talk with Dr. Safran. They are worried about an infection. I tell them about my fever problems at Roger Williams Hospital, but they don't have paperwork on that, so it is not helpful. I explain that I have a fever every night, and a low grade one into most days.
Together the Doctor and the physicians assistant decide that instead of a port, I should get a picc line, a peripherally inserted central catheter, in my left arm. This is a small double ended IV tube that will go into my arm, and into a vein that runs beside my heart. They will insert it while I am awake, and with no pain medication. Once this is agreed upon, there is more paper work and more signatures required.
I am wheeled into the room where they will insert the picc line. There are large machines in this room, with one they will be using to do a live x-ray of me while they are inserting the line. It will be above my face and very close, but not touching it. The PA initials the arm where the picc line is to go in. I scoot over from my transport bed to the table beneath the big round screen. A long plexiglass board is slid beneath me, which extends out at my shoulder so I can rest my left arm on it. They cover me with a plastic and paper blanket to keep me warm. Thank goodness, it is cold in there! The nurses put on their lead armor. These are dresses made of lead. They are all different and colorful, red, blue, one is polka dotted. They look kind of anime and cute. They cover their faces with paper or plastic sheilds, so that it is getting difficult to understand what they are saying. I am asked once again for my name and birthdate. My bracelet is checked as well as the paperwork to be sure the information matches. I am asked why I am in this room. The nurses check and double check everything.
I am not sure of the exact order here, but these things all happened at some point. My upper arm is washed with a blue liquid, which turns my arm, chest and neck blue. The PA and the ultra sound technician look at my veins to select the route they will take up my arm, around my arm pit, over and into a vein running beside my heart. Once a vein is selected they start the operation. They numb the area on my arm where they will be inserting the tube. I feel a sharp pinch, and after that I am left to my imagination. Can I really feel the tube being pushed into my vein? I can't ever imagine how they are doing this. There is pushing and pulling on my upper arm and skin.
At one point I get a stabbing pain. I try not to jump, and tell Laura as calmly and urgently as possible. "That hurt a lot, and now my hand is tingling." Somehow, I think she knew this. She apologizes and asks if it still hurts. I imagine that she was going around the curve near my arm pit and jabbed the vein. How do they even get that tube to turn, I wonder. I really don't want to know or have it explained, I just want this to be over with. I am feeling very agitated, but force myself to lay there calmly, trying to figure out where they are in my body. Finally, we are done.
 |
| Showing off my tribal jewelry |
After I gobble up my muffin, I get dressed and walk over to get an x-ray. They are still trying to figure out the source of my fever, and want to rule out pneumonia. I get the x-ray standing up, something I have never done before.
I am brought back to the room I was in, and wait for a wheel chair to take me over to Fain 3, which is across Fifth Street. As I leave, Kate and Laura bid me farewell. They know I will be back within the next two weeks to have the picc line removed and a port put in.
We wind our way though the hospital, and take an elevator down to the basement. From here there is a tunnel that goes under the street, which I never thought or knew about. We take the elevator up to Fain 3 and I sign in.
I am taken to the Mega suite today. This section of the hospital has a great name, like it is something really big. It is named for the mother of one of the nurses I met during my training session. They donated money in honor of her when they were building the new wing, and her last name was Mega.
These treatment rooms are set up like the rooms I saw on my first visit. It is very busy because of the upcoming Fourth of July Holiday, and they need to utilize more rooms.
We have the luck to be in this wing on piano tuning day. At first we think someone is warming up very badly. Kaileigh, Steven and I joke about it and wonder when if will ever get started. When I hear them playing very out of tune intervals, I figure out that it is being tuned. This continues on for the entire time we are there.
A nurse introduces herself and I immediately forget her name. She takes my vitals again, I still have that fever. This leads to another discussion with Dr. Safran. When she returns, she has blankets, IV meds, a urine sample container and blood sample bottles. While that nurse was out gathering supplies, a phlebotomist comes to draw blood from my right arm. I recognize the hot sauce bottles from the tests they did at Roger Williams Hospital. They need to heat up my blood to look for infection.
They start me on a test run with my picc line. They will run saline through my line to make sure it works. When it is started, I get that alcohol taste in my mouth again. I had thought the foul taste must be from medicine, but it is from plain old saline solution. It is such a weird sensation. The line is running and will go for about an hour.
I need to pee, which is fortunate, since they want a urine sample from me. I push my IV tree into the bathroom to get the job done. These samples are pretty complicated to get if you are a female. First you have to wipe with a special cleaning wipe, front to back one side, front to back the other side, before you can pee. You need to attempt to catch the pee in the small cup without getting it on your hands or all over the cup. Once that is done, you need to find a place to put the cup while you wipe, hold up your dress, pull up your underwear, pull up pants, straighten dress, trying all the while not to get caught up in any of the lines hanging off my arm. Then, there is the mess to clean up from the cup, because of course the pee doesn't go into the cup right away. The trash can lid opposite the toilet is the most convenient place to put it at first, so that needs to be cleaned, and then, the edge of the sink where it ended up while I cleaned the trash can lid. I wish a paper towed had occurred to me. I wipe off the bottle, wash my hands, dry my hands, dry off the bottle, wipe down the sink, and I'm done. Did I mention there is a big sign on the door which says "DO NOT LOCK THIS DOOR!"? All this while worrying that someone will forget to knock on the door, which of course, someone does. How does life get so complicated?
When I return to my pod, they draw some more hot sauce blood from me before I am hooked up to my first two doses of medicine.
We are all very hungry. I have been given some cookies and cranberry juice from the snack cart, but this is only a tease. I have had only that English muffin and a juice since eating very little for dinner last night. Kaileigh orders a Cajun chicken pizza from Pizza Pie-er for lunch.
Kaileigh picks up the pizza. I am not sure I can eat it, I had read in that big binder I was given that you should not eat during your treatment. I check with an aid, and she assures me that I can.
Since I thought before all this started I might have a gluten allergy, I have not had pizza in a couple of months. It tastes so good, I don't even mind that it makes my mouth raw.
I get another two bags of medicine. As the day wears on, the piano is becoming more and more in tune.
Before they give me my chemo, I need to watch a video about the pump I will wear for 46 hours to receive the medicine. It explains how it works and what to do if it should malfunction in any way. After the 46 hours are up, a visiting nurse will come to my house to unhook it for me. This all has to be done very carefully, since the chemo is a biohazard.
When they hook up the pump, they have to run through a test dose to make sure I don't have a reaction and that everything goes through okay. At five forty five, I can finally go home. I feel very good after my day in the hospital, I didn't even need a nap today. True, I sat in a chair all day, so I shouldn't be very tired. I am relieved to have started my treatment, and glad to be heading home.
Another dressing challenge has come my way. Now besides trying to figure out how to best hide my ostomy bag, I need to figure out how to get the lines from my pump through my clothes and onto my body without making a tangled mess. Complicated indeed!
Counting Down to Chemo
Kaileigh, Steven and I go to the Dunkin Donuts Center in downtown Providence for the UUGA Sunday service. It is like a mega church full of Unitarian Universalists today. We find the section that people from out church are sitting in thanks to facebook. I am happy to see so many friends, there are lots of hugs as we inch our way towards seats that Julie has saved for us.
The service is everything you would expect, uplifting music, brilliant, motivating speakers. It lasts an hour and a half and passes quickly. On the way out there are more hugs and kind words. People are surprised and delighted to see me. Although is is tiring, it is good for my head to get out, and good to be with people who care about you. So many people want to hear how I am doing. Seeing me out and about gives them a sense of relief, helps them realize that I am doing okay.
Lonnie finds Julie and I and shows us the afghan we have made for Susan. It has come out beautifully. She evened up the edges and crocheted around the whole thing. Everyone is so pleased. Julie is going to wash it and bring it to her tomorrow. Susan will love it.
When we get outside, I feel it is rather urgent I get a drink. I have forgotten to bring my water bottle, and I have only had one glass of milk to drink so far on this warm day. Usually you can find a lemonade stand on every corner, but not today. We get in the car and head over to Del's. Steve gets me a large and I lick it with my raw, parched tongue. It feels so good.
This afternoon we are to meet my sisters at Iggy's chowder house in Oakland beach. I take a nap so I will have the energy. Kaileigh and Alex drive with us, and Ayla meets us there with my sisters Jill and Sara. We wait in the long line, and enjoy chowder and clamcakes at a table near the beach. I had been hoping for ice cream for dessert, but eat too many clam cakes.
When we get home, I realize I haven't had enough water today. I don't know why it is so hard for me to drink, but it is. I do my best to down some more, knowing that of course, this will result in many trips to the bathroom throughout the night.
I am feeling very grouchy this evening, and I am not sure why. Is it just because I am tired or is it my upcoming chemo treatment? I decide to go to bed early, which turns out to be a bad idea. I wake up a few hours later and can't go back to sleep. I empty the dishwasher. Sometimes a mindless task like this will bore me back to bed, but not this night. I try to go on the computer, but with three other people in the house using the internet, it makes things runs slow and this only frustrates me. I finally go back to bed and manage to sleep, except for frequent bathroom runs. All that darned water!
Monday, June 30th
I get up and have a lot of energy today. I want try getting back into an exercise routine, and decide to do some simple warm ups. These are movements I learned in a Kung Fu class I took years ago, and have been doing for years. I go slow and do only a few of each. I feel it is important to keep strong so I don't hurt myself in my physically demanding job. I can barely stretch. I try a few curls and do a plank. It is hard. I feel so old.
I do my usual start of the day activities to get ready for daycare, today will be a light day.
My visiting nurse comes, and I tell her of my bag changing adventures. I have had to change it on my own once since she last came. She listens and encourages and gives me advice. I set up to put on a new bag. We check my stoma, and it has shrunk down a size. It looks nice and healthy. I put the new bag on with no assistance. Kim tell me I am doing well, a poster child for ostomy care. After all my apprehension over this, it is nice to hear.
I remind her that I am starting chemo tomorrow, and tell her I am afraid of getting diarrhea, one of the possible side effects of the treatment. Once she tells me how to deal with it, I am not so nervous about it.
Once the Kim leaves, I go back to helping with day care. After lunch, I need a nap. When I wake up, I am not feeling so well. I feel cold evern though it is eighty four degrees out this afternoon, so I take my temperature. I have a slight fever and I decide I will not go back to work today. I will rest. I take some Tylenol to nip my fever in the bud, hoping this won't be a problem tomorrow.
Kaileigh has made chili for dinner, which smells delicious. I want to eat, but find I can't. I eat as much as I can and decide to go back to bed.
Steve and Kaileigh decide to go to the new Transformers movie tonight. I am glad to be alone. I have finally realized that having a fever makes me grumpy. I don't feel like talking to anyone or listening to anyone. I don't want to do anything. I just want to close my eyes and be inside my head.
The service is everything you would expect, uplifting music, brilliant, motivating speakers. It lasts an hour and a half and passes quickly. On the way out there are more hugs and kind words. People are surprised and delighted to see me. Although is is tiring, it is good for my head to get out, and good to be with people who care about you. So many people want to hear how I am doing. Seeing me out and about gives them a sense of relief, helps them realize that I am doing okay.
Lonnie finds Julie and I and shows us the afghan we have made for Susan. It has come out beautifully. She evened up the edges and crocheted around the whole thing. Everyone is so pleased. Julie is going to wash it and bring it to her tomorrow. Susan will love it.
When we get outside, I feel it is rather urgent I get a drink. I have forgotten to bring my water bottle, and I have only had one glass of milk to drink so far on this warm day. Usually you can find a lemonade stand on every corner, but not today. We get in the car and head over to Del's. Steve gets me a large and I lick it with my raw, parched tongue. It feels so good.
This afternoon we are to meet my sisters at Iggy's chowder house in Oakland beach. I take a nap so I will have the energy. Kaileigh and Alex drive with us, and Ayla meets us there with my sisters Jill and Sara. We wait in the long line, and enjoy chowder and clamcakes at a table near the beach. I had been hoping for ice cream for dessert, but eat too many clam cakes.
When we get home, I realize I haven't had enough water today. I don't know why it is so hard for me to drink, but it is. I do my best to down some more, knowing that of course, this will result in many trips to the bathroom throughout the night.
I am feeling very grouchy this evening, and I am not sure why. Is it just because I am tired or is it my upcoming chemo treatment? I decide to go to bed early, which turns out to be a bad idea. I wake up a few hours later and can't go back to sleep. I empty the dishwasher. Sometimes a mindless task like this will bore me back to bed, but not this night. I try to go on the computer, but with three other people in the house using the internet, it makes things runs slow and this only frustrates me. I finally go back to bed and manage to sleep, except for frequent bathroom runs. All that darned water!
Monday, June 30th
I get up and have a lot of energy today. I want try getting back into an exercise routine, and decide to do some simple warm ups. These are movements I learned in a Kung Fu class I took years ago, and have been doing for years. I go slow and do only a few of each. I feel it is important to keep strong so I don't hurt myself in my physically demanding job. I can barely stretch. I try a few curls and do a plank. It is hard. I feel so old.
I do my usual start of the day activities to get ready for daycare, today will be a light day.
My visiting nurse comes, and I tell her of my bag changing adventures. I have had to change it on my own once since she last came. She listens and encourages and gives me advice. I set up to put on a new bag. We check my stoma, and it has shrunk down a size. It looks nice and healthy. I put the new bag on with no assistance. Kim tell me I am doing well, a poster child for ostomy care. After all my apprehension over this, it is nice to hear.
I remind her that I am starting chemo tomorrow, and tell her I am afraid of getting diarrhea, one of the possible side effects of the treatment. Once she tells me how to deal with it, I am not so nervous about it.
Once the Kim leaves, I go back to helping with day care. After lunch, I need a nap. When I wake up, I am not feeling so well. I feel cold evern though it is eighty four degrees out this afternoon, so I take my temperature. I have a slight fever and I decide I will not go back to work today. I will rest. I take some Tylenol to nip my fever in the bud, hoping this won't be a problem tomorrow.
Kaileigh has made chili for dinner, which smells delicious. I want to eat, but find I can't. I eat as much as I can and decide to go back to bed.
Steve and Kaileigh decide to go to the new Transformers movie tonight. I am glad to be alone. I have finally realized that having a fever makes me grumpy. I don't feel like talking to anyone or listening to anyone. I don't want to do anything. I just want to close my eyes and be inside my head.
Friday, August 1, 2014
Tonight, in real time...
Sorry my friend, not the planned entry tonight. It is too long and I only have one paragraph done. I just went to see Guardians of the Galaxy with the love of my life. He sat through six hours of doctor visit and chemo with me today, I wanted to make sure he got to this movie that he has been waiting for since he was a teenager. I will try and post early tomorrow. (By the way, it was a really fun movie, even with a muddled chemo head.)
Thank you for looking for me though.
Love,
Kathy
Thank you for looking for me though.
Love,
Kathy
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