It has taken me nine treatments to figure out the best way to deal with folfuri is to sleep through it. Not because I feel tired, but because it feels better. My body must be tired, because I close my eyes and fall asleep, but I don't feel sleepy. I just feel major league crappy. I don't need medicine, I don't need food, all I need is sleep. Sleep four hours, get up for two, sleep some more. The world can march on, just let me sleep. I can sleep all day, and then sleep all night. How is this even possible? I can get through this because on Monday I will feel better. Only this Monday, I don't. I get up to start my day, but after a very short time, it is apparent this is not going to work. I need more sleep. I call in help, and go back to bed. Finally, by Tuesday morning I begin the slow ascent back to feeling unchemoed.
On Friday, during my chemo session, the medical imaging department left a message on my phone. It is very vague, saying only that my doctor has ordered a test for me, and I need to call back to make an appointment. I don't hear this message until Tuesday, because I have been sleeping all weekend. I don't know what kind of test my doctor has scheduled, because we didn't talk about any new tests. I know I have my pet scan scheduled for Thursday, but I wasn't aware of any new tests.
I call back and reach the automated operating system. It is very unhelpful. It expects me to know what kind of test I am calling to schedule, but the person who left me a message didn't say what type of test I am supposed to be scheduling. I press the number for the pet scan department hoping they can help me. It turns out Blue Cross has refused to pay for my pet scan, so my Thursday appointment is cancelled. They will let me have an MRI however, so I schedule one for Sunday,
July 12, at 8am. My appointment with Dr. Safran is on the 14th, so
there will be time for him to get the results before I see him.
I put all of this out of my mind and get ready to enjoy the 4th of July weekend.
Steve and I need to pick my vacuum up in Warwick right after I get done working on Friday. It has been in the repair shop for three weeks and it is finally done. If I don't pick it up, I won't be able to get it for another week, and I really can't wait that long. With a sandbox in the backyard and lots of sandy feet and shoes in my house, it has been a long three weeks.
Since we were in Warwick, and I was feeling pretty good, but chemo hungry, meaning I needed food right away or I'd soon feel too sick to eat, I suggest we try Iggy's. I'll admit to feeling kind of brave about this, given my last experience there, but I don't want to be afraid to eat someplace my family loves. It turns out most of Warwick goes to Iggy's on the 3rd of July. There are fireworks on the beach and people start to get there well before the sun goes down. In the end we were brave to go there for a completely different reason. The line to order stretched down the sidewalk past the playground and toward the beach. Having stood in this line before, we knew that it would go quickly, and decided to go for it. Steve parked the car while I got in line. This line leads to a walk up window, where you order, get a number and wait for your order. Iggy's has been on Oakland beach for years, and they have a very good system. It moves quickly, and since you are out on the sidewalk, there is plenty to see and hear, and before you know it, you have your food.
I was just getting to the edge of where hungry turns to sick when I was next up to to order. When they called me up, a man stepped in front of me from somewhere else. I politely told him where the end of the line was. He looked back in amazement, as if noticing this huge line for the first time. As he shrugged his shoulders and walked off, I laughed at his audacity, and my own as well. Don't mess with someone who is chemo hungry!
Steve and I walked back to the car and ate our dinner. It was the easiest and warmest place to eat. And the chowder was everything I had hoped it would be.
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...
Showing posts with label Iggy's Chowder. Show all posts
Showing posts with label Iggy's Chowder. Show all posts
Thursday, July 23, 2015
Monday, June 22, 2015
A Bad Idea
This is a blog I had started shortly after May 29th. I haven't been able to finish it until today, Monday June 29th. It is a leap back in time, and some of the information in about my treatment is now out of date, but I have left it as I had started it. Sorry if it causes some kind of time warped confusion.
Friday, May 29th was my seventh chemo treatment. Seven down, five more to go. I went courageously, knowing I would come out feeling much worse than I went in. As I start to write this, my stomach churns at the memory of it.
My new chemo friend, Carol was there. I was afraid I might miss her when my appointment got changed to later in the day, but hers had been changed also. Her pod was across the room, on the other side of the nurses station. When I arrived, she was in the area where we wait to have vitals taken before a visit with the doctor. Chemo requires a lot of waiting, reception room waiting, waiting for vitals, waiting for the doctor, waiting for your chemo to be mixed and sent up to the cancer floor, waiting to be filled with the chemo before you can leave. It is nice to have a person to talk to while all this waiting is happening.
By the time I get to the vitals area, Carol has already been called in. A new patient starts talking to me right away when he notices my port. He is in for his second folfox treatment today. He is a guitarist, and worried about losing the sensitivity in his fingers. It will be interesting to see how things progress for him, if we cross paths again.
Dr. Safran has another conference this week, so appointments were pushed later to make it possible for all of his patients to visit with Megan. When it is my turn, I tell Megan my concerns, but there really isn't much she can do about things. She can't tinker with the meds the way Doctor Safran can. I tell her about the raw feeling I have from my tongue to my belly, explain the fire in my belly, and how it happens in the first few days after chemo and into the following week. She hasn't heard anyone describe this problem before, but suggests it could be thrush. She writes me a prescription for a mouthwash. I am dubious about this diagnosis, but I will give it a try.
On my way back from visiting Megan, I find Carol, and stop by to say hello. She is feeling a little down today. We talk about things, and I think she feels better after. For me, once things are spoken about, they often feel lighter and easier to manage. I hope she feels the same way too.
The nurses are happy to see us talking, they like it when patients get together and share their stories. There us a deeper level of understanding from someone who is going through a similar experience, but unfortunately the set up of the floor makes it difficult.
I tell Carol I'm going to go back to my pod to see if my premeds are ready yet. I tell her I will come back to visit when I am hooked up. As I sit and wait, the smell of the room makes me start to feel nauseous. Then the lunch cart to come around. I am not sure if I have made a face at Lenore, but she somehow knows I am not interested in food today. Instead she pushes the cart to the next pod and then comes back to say hello. She asks what I have been knitting lately. I haven't been doing much lately, but I am reading a book of short stories about knitting she asks to see. She tells me about her latest project, before moving on to bring people lunch. I haven't seen Lenore in weeks, but she always remembers who I am.
Once I am hooked up, I can see across the room that Carol is getting hooked up. I wait until things settle down in her pod, reading to pass the time. When everything seems calm across the way, I unplug my IV pump from the wall, and push the wheeled stand across the room to go visiting. Carol is getting ready to take a vacation on Monday. We run through a list of all the special things she will need, to be ready for what ever comes her way. Even though she is going someplace warm, she needs to be prepared for the cool blast of air conditioning, (gloves, sweater, warmer slacks or capri's, socks) or the blazing sun ( extra sunscreen for super sensitive skin, hat, cover up for bare arms). She has also been working throughout her treatment, so a vacation will be good.
Before too long, my meds are getting low, and I am feeling tired. I go back to my pod to rest. I am also waiting for a visit from my friend Marcia.
As I rest, I am thinking about what I might like to eat when I get home. I have been wanting chowder, so I text my daughter Ayla to see if she would like to go to Iggy's in Oakland Beach this evening. She is excited by this idea. We make plans to go once all of the kids are picked up from my house.
I slowly become aware of the acrid cigar smell leaching out of my body. It makes me feel gross.
Marcia comes in to visit as I am feeling badly about this. She smells lovely! Soapy and clean, like fresh flowers. I enjoy her visit even more for the lovely scent she brings with her. She has been away for a few weeks, and shares with me some tales of her travels. She surprises me with a bit of chocolate wrapped in a lovely woven pouch. Her thoughtfulness touches my heart. She always makes me feel so special when she visits me.
Before too long, our visit is over. I am feeling tired, and my stomach is starting to feel badly. I can't wait to be done, go home, take my nausea med and sleep.
When I do get home, I sleep until four thirty. I wake up when I hear Ayla talking to Steve downstairs. All of my babies are gone for the day, even my sister has left. As we prepare to leave, Alex pulls his car into the driveway. He and Filipa have stopped by for a surprise visit! They are just in time to go to Iggy's with us.
I grab a few peppermints before we get into the car. I am very hungry and my stomach is getting queasy. When we hit the highway, there is quite a bit of traffic. It is Friday, rush hour after all. Before we are out of Providence, I am wondering if this is a good idea. Warwick seems so far away now. I try to keep my mind off of my stomach, but it is difficult. I slowly eat some mints to calm the churn.
By the time we make Oakland Beach, I really need food. We find a parking spot quickly, but when I get out of the car, the smell of fried food is overwhelming. I need to cover my nose with my hand to keep the heavy aroma of fried seafood from making me sick.
If you have ever been to Iggy's you know, there is always a line. On this beautiful, warm, sunny, late spring evening, of course the line is long. I tell Ayla I can't wait in the line to order, and Chauncey and I go into the seating area to hunt out a place for five to eat. At first things are okay. We find a small table quickly and take it hoping to upgrade to a bigger one by the time our food arrives. After only a short wait, a larger table opens up, where we will all fit. It is at the edge of a tented area, which seems perfect. There is a breeze blowing up from the nearby beach, which keeps the normally delicious smell of cooking food from making me feel sick.
Chauncey can sense that I am feeling worse and worse, and tries to distract me with stories from our common hometown of East Providence. As the breeze blows, there is a weight at the bottom of the tent flap that keeps banging against my chair. Somehow, the vibration goes straight to my stomach. I try moving my chair, but the weight keeps finding me, thumping, thumping thumping. I must have looked badly, because at one point Chauncey looks at me and says "if you need me to stop talking I understand." I apologize and tell him I need to go sit out in the breeze.
I rest on one of the wooden railings bordering the parking lot. The cool salt air helps calm my stomach. When I notice Alex, Filipa and Ayla have returned from the food line with chowder and clamcakes, and make my way back to the table. Everyone is in a good mood and laughing, and I sit to join them. As I start to eat my favorite red chowder, it becomes apparent I have waited too long. I only take one spoon full before I need to go back outside. As I sit in the breeze and try to calm my nausea, the contents of my stomach comes out. Thick, fizzy, white fluid, the Altoids mints I had been eating to calm the quesiness. I feel like a rabid dog.
Ayla comes out and tells me we can go home, but I tell her I don't mind just waiting in the car while they finish eating. She gives me the keys, and I slowly make my way back to where we parked. I settle in the back seat, cover my eyes with my arm and try to sleep. This is the remedy I need, to sleep until everything is calm again.
Before too long, Ayla and Chauncey come back to the car. They have packed up all the food, and are going to eat at home. I think they must have sent the food home in Alex's car, because there is no food smell in the car.
As we travel back toward Providence, I keep my eyes closed and try to sleep. For some reason, my brain tries to keep track of where I am in the world, and I imagine the things I must be passing by as we drive: the skate board park, the ice cream store, Dave's Market, the airport. I open up my eyes occasionally to see where we are and my guess is way off. Home seems so far away.
I don't remember getting home, or climbing into bed. When I awaken, it is nearly nine. I text Ayla and Alex letting them know I feel much better. Laying in the growing darkness, I hear quiet voices in the kitchen. I go down to find Alex and Filipa have stayed behind to make sure I am okay, and to make me food when I wake up. Alex is eating a popsicle, which looks very appetizing. He gets me one, and we talk a little while we enjoy them. Before too long, Steve comes home. He has been at a fundraiser for the blog he writes for. I am sorry I have missed out attending this with him, but knew I probably wouldn't be able to make it through the event. I wish that part of me had been present enough to realize a ride to Warwick on an empty stomach was also a bad idea.
Friday, May 29th was my seventh chemo treatment. Seven down, five more to go. I went courageously, knowing I would come out feeling much worse than I went in. As I start to write this, my stomach churns at the memory of it.
My new chemo friend, Carol was there. I was afraid I might miss her when my appointment got changed to later in the day, but hers had been changed also. Her pod was across the room, on the other side of the nurses station. When I arrived, she was in the area where we wait to have vitals taken before a visit with the doctor. Chemo requires a lot of waiting, reception room waiting, waiting for vitals, waiting for the doctor, waiting for your chemo to be mixed and sent up to the cancer floor, waiting to be filled with the chemo before you can leave. It is nice to have a person to talk to while all this waiting is happening.
By the time I get to the vitals area, Carol has already been called in. A new patient starts talking to me right away when he notices my port. He is in for his second folfox treatment today. He is a guitarist, and worried about losing the sensitivity in his fingers. It will be interesting to see how things progress for him, if we cross paths again.
Dr. Safran has another conference this week, so appointments were pushed later to make it possible for all of his patients to visit with Megan. When it is my turn, I tell Megan my concerns, but there really isn't much she can do about things. She can't tinker with the meds the way Doctor Safran can. I tell her about the raw feeling I have from my tongue to my belly, explain the fire in my belly, and how it happens in the first few days after chemo and into the following week. She hasn't heard anyone describe this problem before, but suggests it could be thrush. She writes me a prescription for a mouthwash. I am dubious about this diagnosis, but I will give it a try.
On my way back from visiting Megan, I find Carol, and stop by to say hello. She is feeling a little down today. We talk about things, and I think she feels better after. For me, once things are spoken about, they often feel lighter and easier to manage. I hope she feels the same way too.
The nurses are happy to see us talking, they like it when patients get together and share their stories. There us a deeper level of understanding from someone who is going through a similar experience, but unfortunately the set up of the floor makes it difficult.
I tell Carol I'm going to go back to my pod to see if my premeds are ready yet. I tell her I will come back to visit when I am hooked up. As I sit and wait, the smell of the room makes me start to feel nauseous. Then the lunch cart to come around. I am not sure if I have made a face at Lenore, but she somehow knows I am not interested in food today. Instead she pushes the cart to the next pod and then comes back to say hello. She asks what I have been knitting lately. I haven't been doing much lately, but I am reading a book of short stories about knitting she asks to see. She tells me about her latest project, before moving on to bring people lunch. I haven't seen Lenore in weeks, but she always remembers who I am.
Once I am hooked up, I can see across the room that Carol is getting hooked up. I wait until things settle down in her pod, reading to pass the time. When everything seems calm across the way, I unplug my IV pump from the wall, and push the wheeled stand across the room to go visiting. Carol is getting ready to take a vacation on Monday. We run through a list of all the special things she will need, to be ready for what ever comes her way. Even though she is going someplace warm, she needs to be prepared for the cool blast of air conditioning, (gloves, sweater, warmer slacks or capri's, socks) or the blazing sun ( extra sunscreen for super sensitive skin, hat, cover up for bare arms). She has also been working throughout her treatment, so a vacation will be good.
Before too long, my meds are getting low, and I am feeling tired. I go back to my pod to rest. I am also waiting for a visit from my friend Marcia.
As I rest, I am thinking about what I might like to eat when I get home. I have been wanting chowder, so I text my daughter Ayla to see if she would like to go to Iggy's in Oakland Beach this evening. She is excited by this idea. We make plans to go once all of the kids are picked up from my house.
I slowly become aware of the acrid cigar smell leaching out of my body. It makes me feel gross.
Marcia comes in to visit as I am feeling badly about this. She smells lovely! Soapy and clean, like fresh flowers. I enjoy her visit even more for the lovely scent she brings with her. She has been away for a few weeks, and shares with me some tales of her travels. She surprises me with a bit of chocolate wrapped in a lovely woven pouch. Her thoughtfulness touches my heart. She always makes me feel so special when she visits me.
Before too long, our visit is over. I am feeling tired, and my stomach is starting to feel badly. I can't wait to be done, go home, take my nausea med and sleep.
When I do get home, I sleep until four thirty. I wake up when I hear Ayla talking to Steve downstairs. All of my babies are gone for the day, even my sister has left. As we prepare to leave, Alex pulls his car into the driveway. He and Filipa have stopped by for a surprise visit! They are just in time to go to Iggy's with us.
I grab a few peppermints before we get into the car. I am very hungry and my stomach is getting queasy. When we hit the highway, there is quite a bit of traffic. It is Friday, rush hour after all. Before we are out of Providence, I am wondering if this is a good idea. Warwick seems so far away now. I try to keep my mind off of my stomach, but it is difficult. I slowly eat some mints to calm the churn.
By the time we make Oakland Beach, I really need food. We find a parking spot quickly, but when I get out of the car, the smell of fried food is overwhelming. I need to cover my nose with my hand to keep the heavy aroma of fried seafood from making me sick.
If you have ever been to Iggy's you know, there is always a line. On this beautiful, warm, sunny, late spring evening, of course the line is long. I tell Ayla I can't wait in the line to order, and Chauncey and I go into the seating area to hunt out a place for five to eat. At first things are okay. We find a small table quickly and take it hoping to upgrade to a bigger one by the time our food arrives. After only a short wait, a larger table opens up, where we will all fit. It is at the edge of a tented area, which seems perfect. There is a breeze blowing up from the nearby beach, which keeps the normally delicious smell of cooking food from making me feel sick.
Chauncey can sense that I am feeling worse and worse, and tries to distract me with stories from our common hometown of East Providence. As the breeze blows, there is a weight at the bottom of the tent flap that keeps banging against my chair. Somehow, the vibration goes straight to my stomach. I try moving my chair, but the weight keeps finding me, thumping, thumping thumping. I must have looked badly, because at one point Chauncey looks at me and says "if you need me to stop talking I understand." I apologize and tell him I need to go sit out in the breeze.
I rest on one of the wooden railings bordering the parking lot. The cool salt air helps calm my stomach. When I notice Alex, Filipa and Ayla have returned from the food line with chowder and clamcakes, and make my way back to the table. Everyone is in a good mood and laughing, and I sit to join them. As I start to eat my favorite red chowder, it becomes apparent I have waited too long. I only take one spoon full before I need to go back outside. As I sit in the breeze and try to calm my nausea, the contents of my stomach comes out. Thick, fizzy, white fluid, the Altoids mints I had been eating to calm the quesiness. I feel like a rabid dog.
Ayla comes out and tells me we can go home, but I tell her I don't mind just waiting in the car while they finish eating. She gives me the keys, and I slowly make my way back to where we parked. I settle in the back seat, cover my eyes with my arm and try to sleep. This is the remedy I need, to sleep until everything is calm again.
Before too long, Ayla and Chauncey come back to the car. They have packed up all the food, and are going to eat at home. I think they must have sent the food home in Alex's car, because there is no food smell in the car.
As we travel back toward Providence, I keep my eyes closed and try to sleep. For some reason, my brain tries to keep track of where I am in the world, and I imagine the things I must be passing by as we drive: the skate board park, the ice cream store, Dave's Market, the airport. I open up my eyes occasionally to see where we are and my guess is way off. Home seems so far away.
I don't remember getting home, or climbing into bed. When I awaken, it is nearly nine. I text Ayla and Alex letting them know I feel much better. Laying in the growing darkness, I hear quiet voices in the kitchen. I go down to find Alex and Filipa have stayed behind to make sure I am okay, and to make me food when I wake up. Alex is eating a popsicle, which looks very appetizing. He gets me one, and we talk a little while we enjoy them. Before too long, Steve comes home. He has been at a fundraiser for the blog he writes for. I am sorry I have missed out attending this with him, but knew I probably wouldn't be able to make it through the event. I wish that part of me had been present enough to realize a ride to Warwick on an empty stomach was also a bad idea.
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