I get the call on August 12th, two days after I find out that my cancer is in remission. I have been accepted into the study with the drug aflibercept, and I have been randomly chosen to be in the group that will be receiving the drug. I think this is good news?
There is a problem however: I am scheduled to start in one week, on August 19th, the same day Steven is scheduled to have a colonoscopy. I have been trying to get him to go in for this test since I was diagnosed with colon cancer. He is very nervous about it, not because of the procedure, but because it involves getting a needle. He is scheduled to go in around 11 o'clock, and the 1 o'clock appointment they want me to be in Fain 3 for is cutting things too close. Initially I ask if I can come in later, but am told it is a very busy day, and rescheduling will be difficult. I keep the appointment and think about it for a day. I call back and let them know the reason why that time slot will not work. It takes some time, and after a bit of discussion, I get rescheduled to a 3 o'clock appointment. I am a little annoyed, since I am volunteering for this, that it is so difficult to get some cooperation, but in the end, it all works out.
I need to go in to Fain 3 on Friday, to sign papers stating I want to be in this study, what to be expected, what is paid for by the study and what is not. Since I have already been given copies of these papers in advance, I know what they say. I read them again quickly before I initial them. I get to ask more questions, give a urine sample, some blood samples, and have an electrocardiogram.
I will be getting the infusion through my port, in the same area in Fain 3 where I got my chemo. I may even have Faye as my nurse.
Since I had my last infusion is July, I have been slowly coming around to feeling undrugged and more myself. I still have a small bit of neuropathy left over from my folfox treatments, but for the most part, I only notice it when I think about it. The pain I had been feeling in my legs when lying in bed has gradually faded away, and I don't need to have a pillow under my knees any longer in order to sleep. I can sleep on my side as much as I want to now, and snuggle into Steve when the nights are not too hot. This is something I have been missing a lot. Sometimes, I can't sleep any more during the night. It is like I slept so much when I was on chemo, that my body doesn't want to stay in bed a moment longer. I needed more and more sleep over the course of my chemo treatments, and it was really hard to get up some mornings. In the beginning of August, my son Alex and I started walking the Boulevard at 5:45 in the morning. The exercise has been helping me sleep, and I have been feeling stronger. Sometimes, we even run, but then I am so sore the next few days, I am not sure it is worth it. It feels nice to be able to run though, because I haven't been able to do it consistently for so long, if only I could get my bounce back.
As my awareness of time realigns with that of my drug free existence, there is so much that I have let slide in the last eighteen or so months. I wonder if I will ever get caught up. Not that I ever was, but when I open my eyes and look around, it's like Whoa! There is a lot of sliding that has been happening here!
Even though I have given serious thought and discussion to taking part in this study, I am nervous. There are so many unknowns, and, once again, I am going to start taking drugs which might not make me feel so great all the time. Am I crazy for doing this?
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 Dr. Howard Safran. Show all posts
Showing posts with label Dr. Howard Safran. Show all posts
Wednesday, September 16, 2015
Saturday, July 18, 2015
The Last Chemo
June 26, 2015
This is the day of my last chemo session.
I am so ready for this day, although it is hard to get ready to go in for my treatment. There is this huge psychological piece of chemo that is really difficult for me to deal with. There are sounds and smells, even thoughts that go along with all of this that make it hard for me to get to where I need to be; at the Miriam, Fain 3 at 8:00am this morning. I fight all of the fear inside my body, and get myself there on time. This is the last one, this is the last one, has become the mantra playing in my head.
I walk myself over and manage to get in on time. I had wanted to bring the nurses a treat, but didn't leave early enough to do so. Another time, I think and then remind myself that this is the last one. I don't need to come back for more of this. What a strange thought. For the past YEAR, as it is two weeks shy of when I started my first treatment, I have been coming to this place every other Friday, with only a short break for my ostomy reconnection. It has been a time of reflection, discovery, and focus.
I have been with the same group of nurses for this entire time, with only a few exceptions. One nurse, Cassie, left for another position in the hospital. The other nurses on my team, Carolyn, Jenn, Tracy and Faye, have been a constant source of support, besides being there to make sure I get the drugs I need. They have all listened to me explain and complain about how I have been feeling. They have adjusted the IV pumps that push the medicine into me, and brought me warm blankets when I was cold. They are patient, and incredibly kind. It makes me somewhat sad to be saying goodbye to them, even though I can stop by to see them if I need to. I know this is probably unlikely though.
I am disappointed Faye is not on today. She has been my main nurse, from day one. Faye has taken good care of me, we have shared bits and pieces of our year together, and I will miss hearing about what she has been up to and how her family is doing. I am Tracy's patient today. When I choose my pod, she tells me she will make sure Carol knows where I am, and saves the one next door for her.
There is a long wait for me to go in to get my vitals taken this morning. Even though I was one of the first people in, through some mix up, I wait for a long time. I don't really mind. I don't have anywhere else to be, and my friend Nancy is coming to sit with me today. She arrives before I am called out of the waiting area, so she can accompany me in to the exam room and meet Dr. Safran. He congratulates me on making it this far. It turns out that most people aren't able to tolerate so many treatments. He is happy that I look good and that my new goal is to getting strong again. Ever since the snowy winter, I have been making little effort to exercise. I have this funny shaped belly now that I am not happy about, so I am going to try and exercise it away. At least I think I am.
During this visit, I ask him what the chances are of my cancer coming back are. I am somewhat taken aback when he tells me it is around eighty percent. I am disappointed that it is such a high number. He tells me that it is really difficult to know without a doubt if we have defeated every cancer cell. I am scheduled for a pet scan on July 2nd, so if I call the next day, he will be able to tell me how things look, if the cancer is in remission or not. I also have an appointment for the following Tuesday to go over our new plan.
I ask if there is anything I should be doing to keep the cancer at bay. There are so many unknowns with this disease, but two things that seem to be consistently linked are the consumption of red meat, and charbroiled foods.
When I get back to my pod, Carol is in her chair next door. I pull the dividing wall back to open up our two pods so we can talk. I introduce her to my friend Nancy, and we sit all sit and talk until it is time to get hooked up. At one point the lunch Lenore, the lunch lady, and an new assistant, come by to offer us some food. Of course the thought of it makes my stomach lurch, but when I realize I can take mine and give it to Nancy, I quickly ask for a turkey sandwich and then wait until they leave to hand it over. We all look so cozy there, like we are having a little party, that we need to remind the lunch ladies that Carol is a patient deserving of lunch too. I guess this is a testament to how good we both look!
As I sit in my chair, I start to feel dopey and not very well. It is so good to have the distraction of a friend to help me get through this. We talk and I try to ignore how rotten I am feeling. In what has got to be one of the best cases of good timing ever, Steve walks in just as I am getting ready to leave. I give Carol a hug and wish her well. We have exchanged email and phone info so we can keep in touch. I give each of my nurses each a hug too. I know that at some point I will probably see them again, since I will have visits with Dr. Safran, and then possibly other kinds of treatments, but this is the last chemo, hopefully ever.
Nancy has driven over, so she gives Steve and I a ride back to our house, where I can't get to bed fast enough. As I lay in my bed with a pillow covering my eyes, I see lines like cross hatching. At one point I feel as if I am seeing all of the lines around the iris of my eyes, when it occurs to me that I am probably having a migraine. My head doesn't hurt, but my stomach feels awful. I have decided not to take the nausea med this time, because the last time I opened the bottle, the smell of it made me feel like throwing up. I wasn't feeling any better or worse than I had when I was taking it. The only thing that would make me feel better for sure, is a good long nap.
This is the day of my last chemo session.
I am so ready for this day, although it is hard to get ready to go in for my treatment. There is this huge psychological piece of chemo that is really difficult for me to deal with. There are sounds and smells, even thoughts that go along with all of this that make it hard for me to get to where I need to be; at the Miriam, Fain 3 at 8:00am this morning. I fight all of the fear inside my body, and get myself there on time. This is the last one, this is the last one, has become the mantra playing in my head.
I walk myself over and manage to get in on time. I had wanted to bring the nurses a treat, but didn't leave early enough to do so. Another time, I think and then remind myself that this is the last one. I don't need to come back for more of this. What a strange thought. For the past YEAR, as it is two weeks shy of when I started my first treatment, I have been coming to this place every other Friday, with only a short break for my ostomy reconnection. It has been a time of reflection, discovery, and focus.
I have been with the same group of nurses for this entire time, with only a few exceptions. One nurse, Cassie, left for another position in the hospital. The other nurses on my team, Carolyn, Jenn, Tracy and Faye, have been a constant source of support, besides being there to make sure I get the drugs I need. They have all listened to me explain and complain about how I have been feeling. They have adjusted the IV pumps that push the medicine into me, and brought me warm blankets when I was cold. They are patient, and incredibly kind. It makes me somewhat sad to be saying goodbye to them, even though I can stop by to see them if I need to. I know this is probably unlikely though.
I am disappointed Faye is not on today. She has been my main nurse, from day one. Faye has taken good care of me, we have shared bits and pieces of our year together, and I will miss hearing about what she has been up to and how her family is doing. I am Tracy's patient today. When I choose my pod, she tells me she will make sure Carol knows where I am, and saves the one next door for her.
There is a long wait for me to go in to get my vitals taken this morning. Even though I was one of the first people in, through some mix up, I wait for a long time. I don't really mind. I don't have anywhere else to be, and my friend Nancy is coming to sit with me today. She arrives before I am called out of the waiting area, so she can accompany me in to the exam room and meet Dr. Safran. He congratulates me on making it this far. It turns out that most people aren't able to tolerate so many treatments. He is happy that I look good and that my new goal is to getting strong again. Ever since the snowy winter, I have been making little effort to exercise. I have this funny shaped belly now that I am not happy about, so I am going to try and exercise it away. At least I think I am.
During this visit, I ask him what the chances are of my cancer coming back are. I am somewhat taken aback when he tells me it is around eighty percent. I am disappointed that it is such a high number. He tells me that it is really difficult to know without a doubt if we have defeated every cancer cell. I am scheduled for a pet scan on July 2nd, so if I call the next day, he will be able to tell me how things look, if the cancer is in remission or not. I also have an appointment for the following Tuesday to go over our new plan.
I ask if there is anything I should be doing to keep the cancer at bay. There are so many unknowns with this disease, but two things that seem to be consistently linked are the consumption of red meat, and charbroiled foods.
When I get back to my pod, Carol is in her chair next door. I pull the dividing wall back to open up our two pods so we can talk. I introduce her to my friend Nancy, and we sit all sit and talk until it is time to get hooked up. At one point the lunch Lenore, the lunch lady, and an new assistant, come by to offer us some food. Of course the thought of it makes my stomach lurch, but when I realize I can take mine and give it to Nancy, I quickly ask for a turkey sandwich and then wait until they leave to hand it over. We all look so cozy there, like we are having a little party, that we need to remind the lunch ladies that Carol is a patient deserving of lunch too. I guess this is a testament to how good we both look!
As I sit in my chair, I start to feel dopey and not very well. It is so good to have the distraction of a friend to help me get through this. We talk and I try to ignore how rotten I am feeling. In what has got to be one of the best cases of good timing ever, Steve walks in just as I am getting ready to leave. I give Carol a hug and wish her well. We have exchanged email and phone info so we can keep in touch. I give each of my nurses each a hug too. I know that at some point I will probably see them again, since I will have visits with Dr. Safran, and then possibly other kinds of treatments, but this is the last chemo, hopefully ever.
Nancy has driven over, so she gives Steve and I a ride back to our house, where I can't get to bed fast enough. As I lay in my bed with a pillow covering my eyes, I see lines like cross hatching. At one point I feel as if I am seeing all of the lines around the iris of my eyes, when it occurs to me that I am probably having a migraine. My head doesn't hurt, but my stomach feels awful. I have decided not to take the nausea med this time, because the last time I opened the bottle, the smell of it made me feel like throwing up. I wasn't feeling any better or worse than I had when I was taking it. The only thing that would make me feel better for sure, is a good long nap.
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.
Thursday, June 18, 2015
Chemo part 2, Number 8: Port Clogged continued
Nancy and Rasika sit with me through my chemo routine. Rasika has brought me some treats from Seven Stars Bakery which contain ginger, with the hope they will calm my nauseous stomach. There are two ginger scones and a ginger star. Normally I would describe these treats to you, and tell you how delicious these are, but my stomach is so unhappy with the very thought of food. I tuck the bags away and don't even think to share my treasures until Rasika has left. She had brought two scones, I should have offered her one.
Rasika leaves shortly before the lunch cart arrives. Once again Lenore, the lunch lady pushes her cart past my pod, parking it out of my sight before coming back to visit. She wants to hear about my knitting adventures, which I have none to share. It is so lovely of her to ask though, and her understanding of my current food aversion is so appreciated.
I try to ignore the smells of food surrounding me, drifting in from other patients pods. I decide putting some food in my stomach might help settle it. I give Nancy a scone and take a few bites out of my ginger star. It is not quite the right thing, but I remember I have some some dark chocolate scorched almonds Rasika brought from Australia in my backpack. Four of these and I feel a little more settled.
Nancy pulls out her backpack and shows me the entertainments she has brought. She has games, and a map so we can plan an upcoming trip around RI we want to take. We attempt to visit the thirty nine cities and towns in the state, all in one day. Since stopping to take photos in each town with landmarks is part of our goal, we need to plan our route carefully. The tricky part will be getting to Block Island and back. It's not far, but ferrying over, getting off to get photos, and catching the next ferry back without getting distracted could be a challenge. It will be fun to see how long it all takes, our own mini Amazing Race.
Before we decide which activity to do, Nancy needs to step away for a few minutes. I take this opportunity to go next door and visit Carol. She tells me about her vacation, and how she managed with her neuropathy. It sounds like she had a nice, relaxing time. She has received some good news from Dr. Safran today too, so I help her celebrate by sharing my ginger scone with her. Nancy hangs out with us while Carol and I finish catching up, but before too long, I need to return to my chair because my head feels weird. Not anything new, just the usual drugs are being pumped into my body weird.
Nancy and I never end up doing anything she has brought, we just sit and talk. I get spacy, and though I try not to show it I am sure it must be kind of funny. She stays with me right to the end of my treatment, and gives me a ride home. When we arrive at the front of my house, we are greeted by a riot of color on my sidewalk. I have been chalk bombed again.
Wow.
Thanks Rasika, Sanji, Chaya, Brett, Willa, Jasper, Hazel,Thomas, Phoebe, and Alex T and the Mooslazi clan!
Way to make a person feel loved!
Rasika leaves shortly before the lunch cart arrives. Once again Lenore, the lunch lady pushes her cart past my pod, parking it out of my sight before coming back to visit. She wants to hear about my knitting adventures, which I have none to share. It is so lovely of her to ask though, and her understanding of my current food aversion is so appreciated.
I try to ignore the smells of food surrounding me, drifting in from other patients pods. I decide putting some food in my stomach might help settle it. I give Nancy a scone and take a few bites out of my ginger star. It is not quite the right thing, but I remember I have some some dark chocolate scorched almonds Rasika brought from Australia in my backpack. Four of these and I feel a little more settled.
Nancy pulls out her backpack and shows me the entertainments she has brought. She has games, and a map so we can plan an upcoming trip around RI we want to take. We attempt to visit the thirty nine cities and towns in the state, all in one day. Since stopping to take photos in each town with landmarks is part of our goal, we need to plan our route carefully. The tricky part will be getting to Block Island and back. It's not far, but ferrying over, getting off to get photos, and catching the next ferry back without getting distracted could be a challenge. It will be fun to see how long it all takes, our own mini Amazing Race.
Before we decide which activity to do, Nancy needs to step away for a few minutes. I take this opportunity to go next door and visit Carol. She tells me about her vacation, and how she managed with her neuropathy. It sounds like she had a nice, relaxing time. She has received some good news from Dr. Safran today too, so I help her celebrate by sharing my ginger scone with her. Nancy hangs out with us while Carol and I finish catching up, but before too long, I need to return to my chair because my head feels weird. Not anything new, just the usual drugs are being pumped into my body weird.
Nancy and I never end up doing anything she has brought, we just sit and talk. I get spacy, and though I try not to show it I am sure it must be kind of funny. She stays with me right to the end of my treatment, and gives me a ride home. When we arrive at the front of my house, we are greeted by a riot of color on my sidewalk. I have been chalk bombed again.
Wow.
Thanks Rasika, Sanji, Chaya, Brett, Willa, Jasper, Hazel,Thomas, Phoebe, and Alex T and the Mooslazi clan!
Way to make a person feel loved!
Monday, June 15, 2015
Chemo part 2, Number 8: Port Clogged
I have an entry started from my last chemo, but it has been making me feel physically ill each time I try to finish it. I'll have to publish it when it gets further away from a chemo date.
Chemo this week went as expected. I cannot believe how just typing these words brings my stomach up to my throat, it is just incredible. I am going to have a piece of peppermint gum to try and calm my stomach, and hope to get through this entry.
I guess that chemo sentence is not quite true. My nurse and I spent the early part of my visit trying to figure out how to unblock my port. Faye was off today, so I had Tracy, who is often on Fain 3 with me, but never my nurse. Right from the start my port would not give a blood return, which is important when they need three vials of blood for blood work. Tracy pushed saline through my line trying to clear it, but it would not work. The saline went in, but no blood would come out. I tried sitting back, reclining, reclining further, raising my arms, coughing, walking around the nurses station, laying down on a stretcher, raising both arms, coughing some more. Through all of this she still could not get enough blood for my tests. She finally resorted to getting the three vials of blood out of a vein in my hand.
Even though we knew that the saline was going through my line and into my vein, the obstruction at the end of my line still needed to be cleared. The solution is to inject the line with something that breaks down whatever is forming the little flap at the end of my line. I don't remember what the official name of this stuff that got pumped into me is, just that we were calling it drain cleaner. Ugh. Not a pretty picture.
I was worried about what happens to the little bit of stuff, once it breaks down. Does it dissolve or go into my blood stream? Where does it go? The nurse assured me it would not hurt me, that the solution sits in the line, clears up the problem and gets pulled back out. Or something like that. It needs to sit in the line for about an hour, which is about how long it takes to get my vitals done, wait for, and then visit with the doctor.
When I see Dr. Safran, I get some good news. My ct scan looks very good, with only two little dark spots present that he is not sure about. He has asked me if I think I can handle two more chemo treatments, numbers eight and nine. I tell him this chemo is difficult, and that the best way I have found to get through it it by sleeping all weekend. We agree this might not be the worst way to deal with it. I tell him yes, I will do two more chemo treatments.
He tells me we can do a pet scan after the ninth, and then decide what to do from there. I ask him what my options will be. It looks like I have three. One, I can do nothing, and see what happens. I will need to be monitored, since there is a very good incidence of recurrence with this type of cancer. Two: I can take a new drug that is supposed to suppress cancer cells from reoccurring. Three: I can take part in a trial with an experimental drug which will be very closely monitored. Two in three people are on the new drug, the third is on nothing and monitored closely. I think this is good news, but I am also scared. There is a big decision to be made here. The best course of action would have been to never get myself into this position, but it's too late for that.
Before I head to my pod, I find my friend Nancy in the reception area. She has taken a vacation day to come and sit with me while I receive my treatment. As I show her where we will spend the next few hours, we pass Carole, my chemo friend, she is heading off for her doctor's appointment. She has chosen the pod beside mine, so we promise to talk later.
It has only been forty minutes since I have had the drain cleaner in my port. It is still not quite long enough to work. Nancy and I sit and talk to pass the time. My friend Rasika also stops by to visit. She is visiting Providence from Australia, and chosen to spend part of her day here in Fain 3 with me. I am fortunate to have such friends.
Finally, after more reclining, arm raising, and coughing, the thing that gets my blood flowing again is laughter. Of course. Now that my port is all set, I am ready to go, ready to sit for four hours and get chemo slowly, but steadily poured into me.
Chemo this week went as expected. I cannot believe how just typing these words brings my stomach up to my throat, it is just incredible. I am going to have a piece of peppermint gum to try and calm my stomach, and hope to get through this entry.
I guess that chemo sentence is not quite true. My nurse and I spent the early part of my visit trying to figure out how to unblock my port. Faye was off today, so I had Tracy, who is often on Fain 3 with me, but never my nurse. Right from the start my port would not give a blood return, which is important when they need three vials of blood for blood work. Tracy pushed saline through my line trying to clear it, but it would not work. The saline went in, but no blood would come out. I tried sitting back, reclining, reclining further, raising my arms, coughing, walking around the nurses station, laying down on a stretcher, raising both arms, coughing some more. Through all of this she still could not get enough blood for my tests. She finally resorted to getting the three vials of blood out of a vein in my hand.
Even though we knew that the saline was going through my line and into my vein, the obstruction at the end of my line still needed to be cleared. The solution is to inject the line with something that breaks down whatever is forming the little flap at the end of my line. I don't remember what the official name of this stuff that got pumped into me is, just that we were calling it drain cleaner. Ugh. Not a pretty picture.
I was worried about what happens to the little bit of stuff, once it breaks down. Does it dissolve or go into my blood stream? Where does it go? The nurse assured me it would not hurt me, that the solution sits in the line, clears up the problem and gets pulled back out. Or something like that. It needs to sit in the line for about an hour, which is about how long it takes to get my vitals done, wait for, and then visit with the doctor.
When I see Dr. Safran, I get some good news. My ct scan looks very good, with only two little dark spots present that he is not sure about. He has asked me if I think I can handle two more chemo treatments, numbers eight and nine. I tell him this chemo is difficult, and that the best way I have found to get through it it by sleeping all weekend. We agree this might not be the worst way to deal with it. I tell him yes, I will do two more chemo treatments.
He tells me we can do a pet scan after the ninth, and then decide what to do from there. I ask him what my options will be. It looks like I have three. One, I can do nothing, and see what happens. I will need to be monitored, since there is a very good incidence of recurrence with this type of cancer. Two: I can take a new drug that is supposed to suppress cancer cells from reoccurring. Three: I can take part in a trial with an experimental drug which will be very closely monitored. Two in three people are on the new drug, the third is on nothing and monitored closely. I think this is good news, but I am also scared. There is a big decision to be made here. The best course of action would have been to never get myself into this position, but it's too late for that.
Before I head to my pod, I find my friend Nancy in the reception area. She has taken a vacation day to come and sit with me while I receive my treatment. As I show her where we will spend the next few hours, we pass Carole, my chemo friend, she is heading off for her doctor's appointment. She has chosen the pod beside mine, so we promise to talk later.
It has only been forty minutes since I have had the drain cleaner in my port. It is still not quite long enough to work. Nancy and I sit and talk to pass the time. My friend Rasika also stops by to visit. She is visiting Providence from Australia, and chosen to spend part of her day here in Fain 3 with me. I am fortunate to have such friends.
Finally, after more reclining, arm raising, and coughing, the thing that gets my blood flowing again is laughter. Of course. Now that my port is all set, I am ready to go, ready to sit for four hours and get chemo slowly, but steadily poured into me.
Saturday, January 10, 2015
Monday, December 29
This is my vacation week, I don't have any little ones until next Monday. I am going to spend my vacation trying to get some of the cleaning done that has been ignored for so long. My friend Anna is leaving today for her vacation, and has left her car with me. I am very happy about this, since I will be able to make runs to Savers and the recycling facility that I don't get to on weekends.
I have a ct scan at four today, and have to remember not to eat after two o'clock. My scan is at Miriam, which is very convenient. Kaileigh, Steven and I walk over to the hospital where we learn I am the last scan of the day. This makes me think they squeezed me in. There had been a paperwork mix up in the scheduling, and it took a couple of days to get things straightened out.
This will be the scan which shows just how well my Folfox treatments have worked.
This ct room is quiet compared to the other I visited. I don't ask, but I attribute this to newer, greener technology I have read about with the cooling system. This makes the whole experience more relaxing. No loud whooshing sounds.
The drill here is the same as every other time. There is a bed to climb on which slides into the large donut shaped ct machine. I have forgotten to wear pants without metal, but rather than having to change into a johnny, I am covered with a blanket and asked to pull my pants down below my knees.
I get an IV solution in my arm of contrast dye, the one that makes you feel like you might need to pee. The bed slides into the circle of hard plastic up to my shoulders, and slides out. I am instructed by a recorded voice to hold my breath and slowly it slides in again. I notice two emoticon symbols above the bed. One means inhale and hold, the other means breathe. I don't remember seeing these on the other machine I used. Just as my chest finishes going through the donut, I am instructed to breathe again. We repeat this whole process again one more time, and then I am done. It seems to go faster than the last two I have had.
In the evening Kaileigh, Steven and I go to see the movie Big Eyes. It is a good movie, and it was fun to see the big eyed style of paintings, much like those that hung in my bedroom as a child.
Tuesday
Julia and I go to the registry to get her car registered. We have a very frustrating experience. We arrive just before it opens so we won't be there all day, and in the end we leave without accomplishing our task. Most of the people we deal with are surly and unfriendly, surprising since we can only be the second or third person they have seen so far today. The most helpful people we meet are a woman who was there on business, and a woman at the return ticket desk. She was kind and clearly described what we need to do to get Julia's car registered. We need a signature from her mom, so I arrange to meet with her later.
I return home to my cleaning projects. Just before dinner leave to meet with my sister in law at a bank to get her signature notarized on the car registration form. I manage to do this, drop Steven at a meeting, and make it to knitting on time. I don't end up having time to eat, but find some chips in the church kitchen to tide me over until I get home. Ayla and her friend Malani are coming to learn to knit this evening. It is fun to have new knitters join us. I have forgotten that Malani is left handed, but I figure out how to show her a knit stitch.
Wednesday
I return to the DMV with Julia and Steve. We go in later in the morning, and our experience today is far nicer than it was yesterday. I don't know if it is the holiday tonight, but everyone is very helpful. We manage to register Julia's car with no further problems, renew Steven's license and get out of there in an hour and a half. Surely this must be a record.
As we are driving home, Kaileigh calls. She is already at our house waiting to go with me to see Dr. Safran. By the time we get home, there is only a short time before I need to leave for Fain 3. We walk over, I register, get my blood drawn, and my vitals taken. Kaileigh, Steven and I are all shown to one of the exam rooms to wait for Dr. Safran. While we are waiting, one of the teaching nurses comes in to visit with me. She asks how I have been doing, and how my other doctor's visits have been. She tells me Dr. Safran has good news to tell me about my ct scan.
Dr. Safran comes in accompanied by Megan, his resident, and and the nurse who had just visited me. He asks me if I want to see my scan. We go to his computer and and he shows me the scan from October, then the scan from Monday. It is hard to believe this is the same liver. There are no spots, no large tumor obstructing my vein. Everything is gone, my liver looks clean. It is like some kind of magic trick has been performed and my liver has been switched.
We go back to the exam room and Dr. Safran tells me we can plan on reattaching my colon now. After that is done, at the end of February, we will meet again to see how my recovery is going. If things look good, we will discuss starting another round of chemo, which will last about six more months.
I have done it. I have made it through all of my folfox treatments and come out the other side with a clean liver, all by the end of the year. This is by no means the end, but it is one wonderful way to end a year that has been difficult, and start the 2015 with renewed purpose and energy. An upbeat beginning to a new chapter.
I have a ct scan at four today, and have to remember not to eat after two o'clock. My scan is at Miriam, which is very convenient. Kaileigh, Steven and I walk over to the hospital where we learn I am the last scan of the day. This makes me think they squeezed me in. There had been a paperwork mix up in the scheduling, and it took a couple of days to get things straightened out.
This will be the scan which shows just how well my Folfox treatments have worked.
This ct room is quiet compared to the other I visited. I don't ask, but I attribute this to newer, greener technology I have read about with the cooling system. This makes the whole experience more relaxing. No loud whooshing sounds.
The drill here is the same as every other time. There is a bed to climb on which slides into the large donut shaped ct machine. I have forgotten to wear pants without metal, but rather than having to change into a johnny, I am covered with a blanket and asked to pull my pants down below my knees.
I get an IV solution in my arm of contrast dye, the one that makes you feel like you might need to pee. The bed slides into the circle of hard plastic up to my shoulders, and slides out. I am instructed by a recorded voice to hold my breath and slowly it slides in again. I notice two emoticon symbols above the bed. One means inhale and hold, the other means breathe. I don't remember seeing these on the other machine I used. Just as my chest finishes going through the donut, I am instructed to breathe again. We repeat this whole process again one more time, and then I am done. It seems to go faster than the last two I have had.
In the evening Kaileigh, Steven and I go to see the movie Big Eyes. It is a good movie, and it was fun to see the big eyed style of paintings, much like those that hung in my bedroom as a child.
Tuesday
Julia and I go to the registry to get her car registered. We have a very frustrating experience. We arrive just before it opens so we won't be there all day, and in the end we leave without accomplishing our task. Most of the people we deal with are surly and unfriendly, surprising since we can only be the second or third person they have seen so far today. The most helpful people we meet are a woman who was there on business, and a woman at the return ticket desk. She was kind and clearly described what we need to do to get Julia's car registered. We need a signature from her mom, so I arrange to meet with her later.
I return home to my cleaning projects. Just before dinner leave to meet with my sister in law at a bank to get her signature notarized on the car registration form. I manage to do this, drop Steven at a meeting, and make it to knitting on time. I don't end up having time to eat, but find some chips in the church kitchen to tide me over until I get home. Ayla and her friend Malani are coming to learn to knit this evening. It is fun to have new knitters join us. I have forgotten that Malani is left handed, but I figure out how to show her a knit stitch.
Wednesday
I return to the DMV with Julia and Steve. We go in later in the morning, and our experience today is far nicer than it was yesterday. I don't know if it is the holiday tonight, but everyone is very helpful. We manage to register Julia's car with no further problems, renew Steven's license and get out of there in an hour and a half. Surely this must be a record.
As we are driving home, Kaileigh calls. She is already at our house waiting to go with me to see Dr. Safran. By the time we get home, there is only a short time before I need to leave for Fain 3. We walk over, I register, get my blood drawn, and my vitals taken. Kaileigh, Steven and I are all shown to one of the exam rooms to wait for Dr. Safran. While we are waiting, one of the teaching nurses comes in to visit with me. She asks how I have been doing, and how my other doctor's visits have been. She tells me Dr. Safran has good news to tell me about my ct scan.
Dr. Safran comes in accompanied by Megan, his resident, and and the nurse who had just visited me. He asks me if I want to see my scan. We go to his computer and and he shows me the scan from October, then the scan from Monday. It is hard to believe this is the same liver. There are no spots, no large tumor obstructing my vein. Everything is gone, my liver looks clean. It is like some kind of magic trick has been performed and my liver has been switched.
We go back to the exam room and Dr. Safran tells me we can plan on reattaching my colon now. After that is done, at the end of February, we will meet again to see how my recovery is going. If things look good, we will discuss starting another round of chemo, which will last about six more months.
I have done it. I have made it through all of my folfox treatments and come out the other side with a clean liver, all by the end of the year. This is by no means the end, but it is one wonderful way to end a year that has been difficult, and start the 2015 with renewed purpose and energy. An upbeat beginning to a new chapter.
Saturday, January 3, 2015
Friday, December 19: The last Folfox
I get up early and take my last shower for the next few days. I try to get everything together that I will need today, I don't want to forget anything. I am not in the mood for the sandwich cart, so I bring some grapes and cheese with me.
My appointment is at eight twenty which means I could get out early if all goes well.
Today is supposed to be my last folfox treatment. Steve and I talk about it as we walk in. I am nervous that my white blood count will be too low today. I am afraid they won't be able to treat me.
Steven and I split up at Fifth Street. He goes on to Seven Stars to get me some olive bread to have with my lunch, I head over to the Fain building. Faye takes me in as soon as I get registered, and since I am one of the first in, I get my pick of all the rooms. Because they are expecting such a busy day today, we are in the Mega suite, and I choose the same penthouse pod I had last time.
I get my blood drawn and then see Bess to get have my blood pressure checked and get weighed. My blood pressure is very low. If only I could give a little of my low blood pressure to Steve. My weight is back to where it was pre-all of this stuff happening. Even a couple of pounds more. I liked it when it was a few pounds less, but know my current weight is good. It is better to be a little over before I have surgery.
We wait for Dr. Safran to see us. He tells me my white blood cell count is a little low, but he thinks it will be okay to treat me anyway. It is close to borderline, which he decides is good enough. He tells me that even though this is to be my last folfox for now, the side effects will most likely continue to get worse before they get better. I can expect them to worsen over the next two months, then they should gradually subside.
I ask if he has counted the spots on my liver, and he invites me to see my scans, the first from June and the second from October. In the first scan, there are a lot of spots on my liver. A. Lot. There is a big blotch where those veins are exiting my liver. It looks pretty scary. I can't believe how bad it looks. In the scan from October, things have shrunken down considerably, but it is still pretty messy looking. The last scan was six weeks ago. I will have another on twenty ninth to see how things look now.
We discuss the liver and the colon surgery. It looks like Dr. Charpentier and Dr. Lentrichia don't operate in the same hospitals. I tell Dr. Safran that I don't want to switch surgeons, that I would like Dr. Lentrichia to repair my colon, even if it means an extra surgery. He likes this idea.
We make an appointment for the thirty first, New Years Eve. By then he will have the results of my CT scan, and we can make a plan for the next phase of my treatment. I think this will be a good way to end this year.
While I am getting my chemo, Dr. Safran stops by to tell me my cea level is two. In a person without cancer, five or below is considered normal. This is more good news.
In the evening, Kaileigh, Alex, Steven, Jill, Brian, and I take Sara out to Flatbread Pizza to celebrate her birthday. None of us have been here before, and we enjoy everything about it. We finish our meal with some cupcakes and a round of Happy Birthday.
This has been a most excellent day.
My appointment is at eight twenty which means I could get out early if all goes well.
Today is supposed to be my last folfox treatment. Steve and I talk about it as we walk in. I am nervous that my white blood count will be too low today. I am afraid they won't be able to treat me.
Steven and I split up at Fifth Street. He goes on to Seven Stars to get me some olive bread to have with my lunch, I head over to the Fain building. Faye takes me in as soon as I get registered, and since I am one of the first in, I get my pick of all the rooms. Because they are expecting such a busy day today, we are in the Mega suite, and I choose the same penthouse pod I had last time.
I get my blood drawn and then see Bess to get have my blood pressure checked and get weighed. My blood pressure is very low. If only I could give a little of my low blood pressure to Steve. My weight is back to where it was pre-all of this stuff happening. Even a couple of pounds more. I liked it when it was a few pounds less, but know my current weight is good. It is better to be a little over before I have surgery.
We wait for Dr. Safran to see us. He tells me my white blood cell count is a little low, but he thinks it will be okay to treat me anyway. It is close to borderline, which he decides is good enough. He tells me that even though this is to be my last folfox for now, the side effects will most likely continue to get worse before they get better. I can expect them to worsen over the next two months, then they should gradually subside.
I ask if he has counted the spots on my liver, and he invites me to see my scans, the first from June and the second from October. In the first scan, there are a lot of spots on my liver. A. Lot. There is a big blotch where those veins are exiting my liver. It looks pretty scary. I can't believe how bad it looks. In the scan from October, things have shrunken down considerably, but it is still pretty messy looking. The last scan was six weeks ago. I will have another on twenty ninth to see how things look now.
We discuss the liver and the colon surgery. It looks like Dr. Charpentier and Dr. Lentrichia don't operate in the same hospitals. I tell Dr. Safran that I don't want to switch surgeons, that I would like Dr. Lentrichia to repair my colon, even if it means an extra surgery. He likes this idea.
We make an appointment for the thirty first, New Years Eve. By then he will have the results of my CT scan, and we can make a plan for the next phase of my treatment. I think this will be a good way to end this year.
While I am getting my chemo, Dr. Safran stops by to tell me my cea level is two. In a person without cancer, five or below is considered normal. This is more good news.
In the evening, Kaileigh, Alex, Steven, Jill, Brian, and I take Sara out to Flatbread Pizza to celebrate her birthday. None of us have been here before, and we enjoy everything about it. We finish our meal with some cupcakes and a round of Happy Birthday.
This has been a most excellent day.
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