I had chemo #2 yesterday of the final 12 treatments. So far both treatments have gone quite well and I have been able to function afterwards pretty well. I have been getting horrible hot flashes and neck pain that have kept me from sleeping, so that will be the next hurdle to jump.
My last menstrual cycle began on 11/28/10, and I still haven't completely stopped bleeding. (It is now 12/31/10) A few days ago, I went to have a sonogram of my pelvis because my OB/GYN was concerned with the bleeding, as he should be. I found out today that I most likely have a polyp that needs to be removed. I don't know exactly when this will happen, but I am really concerned about having surgery at this time. First of all I am already anemic and any surgery will of course make this worse. Second, I am already weak from chemo and surgery will make me weaker and the recovery time harder. Third, I wonder if I had surgery now if this would delay my chemo...and I'm sure it would. Fourth, my white blood count has been compromised from the chemo and therefore it would be difficult to fight any infection that I would get from the surgery.
My oncologist assured me that this polyp is not cancer and to concentrate on not worrying. She is supposed to talk to my OB/GYN to see if the surgery can be delayed until after chemo.
My weight has continued to climb and my oncologist assured me that every one of her breast cancer patients have gained 10 pounds or more. I am trying to do weight watchers and since I have been feeling better, I am going to try to go out and ride my bike again for short distances. (Since the weather has been warm, I figured I'd better take advantage of it.)
I have continued to have sleep problems because of the horrible hot flashes that I have been experiencing with the chemo. Tonight is a typical night of sleep, about 4 hours.
Since my white blood cell count is low again, I will be going in for another neulasta shot this morning. Hopefully this will increase my immunity so that I can continue to fight infections.
Yesterday, right before the chemo treatment, I began to cry. It seems that this is a new ritual for me. I am not sure why I am crying except that I have a lot of frustrations about my life and my health. I have always considered myself to be healthy, and now I find myself at age 42 with a barrage of health problems. Cancer, migraines, and neck problems, including degenerative and bulging disk, arthritis and bone spurs. To add insult to injury, I received a letter from my insurance company inviting me to participate in a "case management program." They said, "As part of your benefits and at no additional cost, this program is available to help our members who may be experiencing chronic health conditions and/or complex medical problems." It sounds like a nice program actually, but instead of addressing the letter to Emily Gurwitz, it should have said, Dear Terminally Fucked....
I have always taken good care of myself my whole life. I try to eat right, exercise, and get sleep. I have never smoked a cigarette in my life and I rarely if ever drink alcohol. I always assumed I'd live a long life. I am now not so sure of that. I am hoping that 2011 is a much better year.
Chemosabe
Friday, December 31, 2010
Thursday, December 23, 2010
Chemo and my dreamlike state of being
Today begins the halfway mark with chemo and I just got back from my first treatment of taxol, that I will receive once a week for 12 weeks. I had to wear frozen mittens and booties during the course of the treatment so that the chemo won't go to the hands and feet causing neuropathy. The nurse also loaded me up with benedryl, ativan (a calming agent), and some anti-nausea meds..The best way to describe the way I feel now is drunk..
Lately, before this treatment, I have been having issues with sleeping and awake time. It seems as though I am in a constant dreamlike state, even when I'm awake. I can still drive my car, teach my classes, and interact with people. But there seems to be a fog around me that I can't penetrate...It also feels like everyone around me is moving really fast and I'm moving really slowly. At night, when I dream, the dreams are so real that when I wake up I'm not sure if what I dreamed was reality or not. When I'm sleeping most nights, especially right after chemo, it's a very deep sleep and it is continuous throughout the night.
I have many recurring dreams during these long sleeps, but I couldn't tell you what they all are. Just as I'm about to drift off, I recognize that one of my recurring dreams is coming up...Sort of like a movie preview.. I just forget what the preview was when I wake up.
Some of the recurring dreams I have quite often are weather related. I very often have a dream of being very close to a tornado. I'm outside and the wind is roaring and debris is flying everywhere. I run into a house and try to hide, but I have this sick fascination with the tornado..So I go back outside and just stare at it without blinking just to see it all. Miraculously, it doesn't harm me.
Another recurring dream that I have is about elevators. I have always had fears of dropping in an elevator and crashing to the floor. In these dreams, I never crash to the floor, but the velocity of the falling elevator throws me on my back and I'm stuck to the ceiling facing the floor. I don't know if this could really happen in a falling elevator or if I'm watching too many Bugs Bunny cartoons..I keep trying to peel myself off the ceiling of the elevator because people are staring at me..I keep thinking to myself, "Why do these assholes keep looking at me? We're all plummeting to our deaths, they should be bracing for impact.
I almost always have flying dreams. In the dream if I want to fly, I run as fast as I can and jump with my arms flapping away from my body. I immediately take off into the sky. Most of the times in my dreams, I'm flying at night and I'm trying to escape something or someone. I hide in trees or on roofs of buildings. Landing is always the most fearful for me..and I actually never remember doing it.
I am still quite drunk, so I'm going to go take a quick nap in my other world. I was really worried about this treatment, and so far it seems to have gone ok. I'll keep you posted :)
Happy Holidays and good naps to all,
Chemosabe
Lately, before this treatment, I have been having issues with sleeping and awake time. It seems as though I am in a constant dreamlike state, even when I'm awake. I can still drive my car, teach my classes, and interact with people. But there seems to be a fog around me that I can't penetrate...It also feels like everyone around me is moving really fast and I'm moving really slowly. At night, when I dream, the dreams are so real that when I wake up I'm not sure if what I dreamed was reality or not. When I'm sleeping most nights, especially right after chemo, it's a very deep sleep and it is continuous throughout the night.
I have many recurring dreams during these long sleeps, but I couldn't tell you what they all are. Just as I'm about to drift off, I recognize that one of my recurring dreams is coming up...Sort of like a movie preview.. I just forget what the preview was when I wake up.
Some of the recurring dreams I have quite often are weather related. I very often have a dream of being very close to a tornado. I'm outside and the wind is roaring and debris is flying everywhere. I run into a house and try to hide, but I have this sick fascination with the tornado..So I go back outside and just stare at it without blinking just to see it all. Miraculously, it doesn't harm me.
Another recurring dream that I have is about elevators. I have always had fears of dropping in an elevator and crashing to the floor. In these dreams, I never crash to the floor, but the velocity of the falling elevator throws me on my back and I'm stuck to the ceiling facing the floor. I don't know if this could really happen in a falling elevator or if I'm watching too many Bugs Bunny cartoons..I keep trying to peel myself off the ceiling of the elevator because people are staring at me..I keep thinking to myself, "Why do these assholes keep looking at me? We're all plummeting to our deaths, they should be bracing for impact.
I almost always have flying dreams. In the dream if I want to fly, I run as fast as I can and jump with my arms flapping away from my body. I immediately take off into the sky. Most of the times in my dreams, I'm flying at night and I'm trying to escape something or someone. I hide in trees or on roofs of buildings. Landing is always the most fearful for me..and I actually never remember doing it.
I am still quite drunk, so I'm going to go take a quick nap in my other world. I was really worried about this treatment, and so far it seems to have gone ok. I'll keep you posted :)
Happy Holidays and good naps to all,
Chemosabe
Saturday, November 27, 2010
Thanksgiving and the girl with the nipple tattoos
I have been on Thanksgiving break for six days and it has seemed like only minutes have gone by. It has truly been the fastest Thanksgiving week of my life. Friday night was spent chillaxin and all day Saturday we cleaned the house. On Sunday, we left for Bastrop and came back on Wednesday. On Thursday (Thanksgiving) we left for Austin for Thanksgiving lunch and then we came back to San Antonio for dinner. I ate so much I thought I was going to explode or have to have my stomach pumped at the ER...Today, I spent time with my brother and kids and I went for a bike ride. It was a little too cold out to ride bikes, but I didn't care. It felt good to be a little athletic and to be outside....working off some of the Thanksgiving blubber.
So, this is the point in my blog where I should be writing about how thankful I am for everything in my life. And, don't get me wrong, I am thankful for many things. Instead (for some reason), I am going to write about all of the bizarre ironies I have discovered very recently. Some of these things have nothing to do with my disease...I just feel like writing about them...Maybe the reason is that it's 3:34 in the morning and I am awake and my mind is racing...
When I was a middle school student, I was called Mushroom. The name used to make me cry and it infuriated me. I was called that horrible name because it apparently represented my body shape. I had very thick hair that was cut in a bowl shape and because of its thickness, stood out from my head. I was also flat chested and had no body curves...my shadow was a mushroom. Many years later, I developed breasts and they ended up being quite large, a 36D or 36DD. I used to get comments/compliments on them all of the time. My hair actually became even thicker and wavier as I got older and I grew it out. I had the hardest time brushing it because it would become easily tangled and I used to complain because of the amount of time it would take to care for it.
In some respects, it seems as though I am back to that awkward physical stage of middle school. No breasts again, or as someone recently put it "NTAA" no tits at all. In some ways I have breasts and they were made from the fat of my abdomen, but they are incomplete as my final surgeries will happen in the summer..They are incomplete much the way my breasts were as an adolescent..they are undeveloped. (I have yet to have my nipples created and the areolas tattooed on.) The hair on my head and everywhere else has been reduced to a fine black fuzz. When I look at myself in the mirror now, I see that underdeveloped adolescent again. How ironic that the hair I used to complain about is no longer on my head. Although I'm not a mushroom anymore..I instead look like one of those bald nippleless mannequins that we see without clothes in the department store. I am awkward once again at age 42.
During Thanksgiving in Austin, I was struck with more ironies. My husband's family is a great one with many kind-hearted people and a great history but very divided in a couple of ways. Every Thanksgiving, many members of that side of the family attend the UT/A&M game. They all show up in their college garb...some wear the UT shirts, some wear the A&M shirts and they argue in a very light-hearted way about who is going to win the game. Even with all of this, it is obvious that it is all in fun and that they all care deeply about one another. I was also struck, as I am every year, about the huge political divide that occurs on that side of the family. Most of the family are democrats and some of them are republicans. And once again, there is some debate and argument about our current political era. Every year, I am blown away by a few things.
First, one of the members of the family is one of the main authors of the "No Child Left Behind" act that we educators have to contend with year after year. Although this man is a friendly and kind one, has children of his own, I find him to be a hypocrite. He believes whole-heartedly in this legislation that I have had to deal with for years, and yet his children go to private school and have tutors. One of the tutors attended the Thanksgiving dinner. (There is also a rumor, which I have yet to confirm, that one or both of his children have been home-schooled for a time.) This man was also on the Dallas school board, but has spent absolutely no time in a public school classroom. Is it strange and ironic that he is making legislation for us educators? Absolutely....I also think that the fact that his children are not even in the system at all and have private tutors is not only ironic but disgusting....
I also found it interesting that these same family members, who are Republicans, wished me well in my healing. They assured me that they have been thinking about me and hoping for the best. Ironic that they just voted for candidates that want to repeal Obama's health care reform. How do they know that I don't rely on help for my health care from the government? My in-laws spend hundreds and sometimes thousands of dollars per month on medications necessary to live. Do the Republicans in the same family feel that my in-laws deserve no help from the government to pay for these necessary meds?
If it wasn't for the FMLA act created under the Clinton administration, I probably wouldn't have a job right now because of all of the time I have needed to take off. (Under normal circumstances, without FMLA, I would have been fired. I am also fortunate that I am a government employee.) I wonder if the Republican members of my family wouldn't mind repealing that legislation as well since it doesn't aid in the Republican agenda of big business and small government. Do these family members really give a shit about my health, or are they just paying me lip service? When the prayer was recited by a Republican member of the family before the Thanksgiving luncheon, thanking God for all that he has given us, was he thanking God for the election results?
I don't have a clean large house, or great health, or monetary riches like many others. I do have my my beautiful children, a job that I love, a sense of humor, and a few people in my life that I know truly love me despite my shortcomings. Most of all, I have my mind and determination..A sense of myself that is becoming stronger every day. And for those things I am grateful...Amen.
Chemosabe
So, this is the point in my blog where I should be writing about how thankful I am for everything in my life. And, don't get me wrong, I am thankful for many things. Instead (for some reason), I am going to write about all of the bizarre ironies I have discovered very recently. Some of these things have nothing to do with my disease...I just feel like writing about them...Maybe the reason is that it's 3:34 in the morning and I am awake and my mind is racing...
When I was a middle school student, I was called Mushroom. The name used to make me cry and it infuriated me. I was called that horrible name because it apparently represented my body shape. I had very thick hair that was cut in a bowl shape and because of its thickness, stood out from my head. I was also flat chested and had no body curves...my shadow was a mushroom. Many years later, I developed breasts and they ended up being quite large, a 36D or 36DD. I used to get comments/compliments on them all of the time. My hair actually became even thicker and wavier as I got older and I grew it out. I had the hardest time brushing it because it would become easily tangled and I used to complain because of the amount of time it would take to care for it.
In some respects, it seems as though I am back to that awkward physical stage of middle school. No breasts again, or as someone recently put it "NTAA" no tits at all. In some ways I have breasts and they were made from the fat of my abdomen, but they are incomplete as my final surgeries will happen in the summer..They are incomplete much the way my breasts were as an adolescent..they are undeveloped. (I have yet to have my nipples created and the areolas tattooed on.) The hair on my head and everywhere else has been reduced to a fine black fuzz. When I look at myself in the mirror now, I see that underdeveloped adolescent again. How ironic that the hair I used to complain about is no longer on my head. Although I'm not a mushroom anymore..I instead look like one of those bald nippleless mannequins that we see without clothes in the department store. I am awkward once again at age 42.
During Thanksgiving in Austin, I was struck with more ironies. My husband's family is a great one with many kind-hearted people and a great history but very divided in a couple of ways. Every Thanksgiving, many members of that side of the family attend the UT/A&M game. They all show up in their college garb...some wear the UT shirts, some wear the A&M shirts and they argue in a very light-hearted way about who is going to win the game. Even with all of this, it is obvious that it is all in fun and that they all care deeply about one another. I was also struck, as I am every year, about the huge political divide that occurs on that side of the family. Most of the family are democrats and some of them are republicans. And once again, there is some debate and argument about our current political era. Every year, I am blown away by a few things.
First, one of the members of the family is one of the main authors of the "No Child Left Behind" act that we educators have to contend with year after year. Although this man is a friendly and kind one, has children of his own, I find him to be a hypocrite. He believes whole-heartedly in this legislation that I have had to deal with for years, and yet his children go to private school and have tutors. One of the tutors attended the Thanksgiving dinner. (There is also a rumor, which I have yet to confirm, that one or both of his children have been home-schooled for a time.) This man was also on the Dallas school board, but has spent absolutely no time in a public school classroom. Is it strange and ironic that he is making legislation for us educators? Absolutely....I also think that the fact that his children are not even in the system at all and have private tutors is not only ironic but disgusting....
I also found it interesting that these same family members, who are Republicans, wished me well in my healing. They assured me that they have been thinking about me and hoping for the best. Ironic that they just voted for candidates that want to repeal Obama's health care reform. How do they know that I don't rely on help for my health care from the government? My in-laws spend hundreds and sometimes thousands of dollars per month on medications necessary to live. Do the Republicans in the same family feel that my in-laws deserve no help from the government to pay for these necessary meds?
If it wasn't for the FMLA act created under the Clinton administration, I probably wouldn't have a job right now because of all of the time I have needed to take off. (Under normal circumstances, without FMLA, I would have been fired. I am also fortunate that I am a government employee.) I wonder if the Republican members of my family wouldn't mind repealing that legislation as well since it doesn't aid in the Republican agenda of big business and small government. Do these family members really give a shit about my health, or are they just paying me lip service? When the prayer was recited by a Republican member of the family before the Thanksgiving luncheon, thanking God for all that he has given us, was he thanking God for the election results?
I don't have a clean large house, or great health, or monetary riches like many others. I do have my my beautiful children, a job that I love, a sense of humor, and a few people in my life that I know truly love me despite my shortcomings. Most of all, I have my mind and determination..A sense of myself that is becoming stronger every day. And for those things I am grateful...Amen.
Chemosabe
Saturday, November 20, 2010
Imagery
Some of my very distintive traits are my overly sensitive sense of taste, smell, touch, hearing, and visual imagery. As a musican and artist, these traits are very desirable and even mandatory to be sucessful. As a chemo patient, these traits have at times made my life a nightmare.
It is very difficult to write this portion of my blog because in doing so, I will be bringing up imagery that will make me nauseated and disturbed. With that being said, I think it is an important part of this journey to document.
I want to say first off, that I adore my oncologist. She is a very intelligent and sensitive doctor. She really cares about her patients and tries to make them as comfortable as possible during their treatments. She has a beautiful and very large clinic with all kinds of amenities to help her patients feel at home. The chemo treatment room, where I receive all of my chemo treatments, is very large with nice recliners and big open windows that overlook beautiful trees. During the treatments, along with the very kind nurses, are volunteers that come around with crackers, cookies, and other treats for the patients so that they feel more comfortable. The clinic also supply pillows and blankets for the chemo patients and live music (a harpist) to help calm everyone. Even with all of these amenities, as soon as I walk into the chemo room and then begin my chemo, I am assaulted with sounds, tastes, smells, and other things, that traumatize and nauseate me for days after.
When I enter the room for my treatments, I hear the bells going off from the IV bags needing to be emptied. One goes off, then another one echos in another part of the room..then another...During most of my treatments, I listen to my i-pod, or watch a movie so that I don't focus on the incessant ringing. I still hear those sounds, but they are muted with the headphones. When I think about those bell tones, my stomach gets sour.
The smells...oy the smells are probably the worst for me. I have always had a sensitive nose and have joked that I could smell an ant farting in Africa. Since chemo, that ant lives on Mars..The liquid anti-bacterial soap in the restroom is really strong and chemical smelling. After I have used it, I smell it on my hands for days even though I continue to wash my hands obsessively. I am not sure if it is just my imagination that I'm smelling that soap or if it's just hard to wash off the smell. The next time I go in for treatment, I'm bringing my own hand soap.
My sense of taste has changed, but not as much as I thought it would as far as food goes. The thing that has been difficult for me is the consumption of liquids. Most fluids at one time or another taste like gasoline because anything I drink has a chemical aftertaste. I alternate the type of fluids that I drink in hopes that I'll find something that doesn't make me queasy. Sometimes I can drink plain water and sometimes I can't. The peach/banana nectar that I have been adding to my water for the last week has suddenly given me the gasoline taste and heartburn, so I have to find another juice. Lately, plain decaf tea with a little sugar has been ok. As soon as the nurse puts the needle into my port and starts pumping saline into my iv, I start tasting chemicals. (Having a bad taste from the initial saline is common.)
As far as visuals go, one of the medications I receive for chemo, called adraimyacin, is the color of big red..It's a light red/dark pink color. I used to associate that color with strawberry soda and Hawaiian punch as a kid. Now I associate it with chemo. I can no longer drink or look at anyone drinking anything that color because I get very nauseated. Ethan was having one of those drinks the other night at dinner and I had to leave the room until he finished it. I ran out gagging.
Sometimes when I think about the needle that goes into my medi-port for chemo, I get queasy. Although the port is very useful and keeps me from being stuck all of the time for blood counts, the initial stick is quite painful. Sometimes when I move a certain way, my port is agitated and that makes me queasy because I associate it with the stick.
From the very beginning of this journey with cancer, I have been told that most of dealing with this is having a positive mindset. At the time of initially being told this, I had my doubts. I can now tell you without hesitation, that this fight is entirely about attitude and perspective. Ironically, the hardest part of my treatments so far has been fighting the imagery from chemo and not the chemo itself. I have also been told by many, "You should get into a cancer support group." I know that because I am now so sensitive to my surroundings and suggestions about what others say, there is no way that I will do that. Hearing about someone else's misery will only give me more negative imagery to focus on. My empathy and sensitivity as a musician and teacher is a huge strength..in chemo it is an immense weakness.
On a positive note, I am very excited about Thanksgiving for many reasons. First and foremost, I am thrilled to be able to spend time with my family and my darling brother who I don't see very often. It is also great to be able to spend uninteruppted time with them without worrying about work. I am also very excited for the different wonderful foods and smells from Thanksgiving. I have always loved the traditional turkey dinner with gravy and stuffing. My parents make the most wonderful cornbread stuffing with gravy. When I get to the driveway of their house, I can smell the dinner as soon as I step out of the car.
Even though this entry has been so difficult to write about, I am so glad that I did. It is great to write and get these feelings out of me. Somehow writing and reading the entry removes it from me, puts it on the screen, and I don't feel those things quite as intensely.
Thank you for reading and accompanying me on my journey. Have a wonderful holiday.
Chemosabe
It is very difficult to write this portion of my blog because in doing so, I will be bringing up imagery that will make me nauseated and disturbed. With that being said, I think it is an important part of this journey to document.
I want to say first off, that I adore my oncologist. She is a very intelligent and sensitive doctor. She really cares about her patients and tries to make them as comfortable as possible during their treatments. She has a beautiful and very large clinic with all kinds of amenities to help her patients feel at home. The chemo treatment room, where I receive all of my chemo treatments, is very large with nice recliners and big open windows that overlook beautiful trees. During the treatments, along with the very kind nurses, are volunteers that come around with crackers, cookies, and other treats for the patients so that they feel more comfortable. The clinic also supply pillows and blankets for the chemo patients and live music (a harpist) to help calm everyone. Even with all of these amenities, as soon as I walk into the chemo room and then begin my chemo, I am assaulted with sounds, tastes, smells, and other things, that traumatize and nauseate me for days after.
When I enter the room for my treatments, I hear the bells going off from the IV bags needing to be emptied. One goes off, then another one echos in another part of the room..then another...During most of my treatments, I listen to my i-pod, or watch a movie so that I don't focus on the incessant ringing. I still hear those sounds, but they are muted with the headphones. When I think about those bell tones, my stomach gets sour.
The smells...oy the smells are probably the worst for me. I have always had a sensitive nose and have joked that I could smell an ant farting in Africa. Since chemo, that ant lives on Mars..The liquid anti-bacterial soap in the restroom is really strong and chemical smelling. After I have used it, I smell it on my hands for days even though I continue to wash my hands obsessively. I am not sure if it is just my imagination that I'm smelling that soap or if it's just hard to wash off the smell. The next time I go in for treatment, I'm bringing my own hand soap.
My sense of taste has changed, but not as much as I thought it would as far as food goes. The thing that has been difficult for me is the consumption of liquids. Most fluids at one time or another taste like gasoline because anything I drink has a chemical aftertaste. I alternate the type of fluids that I drink in hopes that I'll find something that doesn't make me queasy. Sometimes I can drink plain water and sometimes I can't. The peach/banana nectar that I have been adding to my water for the last week has suddenly given me the gasoline taste and heartburn, so I have to find another juice. Lately, plain decaf tea with a little sugar has been ok. As soon as the nurse puts the needle into my port and starts pumping saline into my iv, I start tasting chemicals. (Having a bad taste from the initial saline is common.)
As far as visuals go, one of the medications I receive for chemo, called adraimyacin, is the color of big red..It's a light red/dark pink color. I used to associate that color with strawberry soda and Hawaiian punch as a kid. Now I associate it with chemo. I can no longer drink or look at anyone drinking anything that color because I get very nauseated. Ethan was having one of those drinks the other night at dinner and I had to leave the room until he finished it. I ran out gagging.
Sometimes when I think about the needle that goes into my medi-port for chemo, I get queasy. Although the port is very useful and keeps me from being stuck all of the time for blood counts, the initial stick is quite painful. Sometimes when I move a certain way, my port is agitated and that makes me queasy because I associate it with the stick.
From the very beginning of this journey with cancer, I have been told that most of dealing with this is having a positive mindset. At the time of initially being told this, I had my doubts. I can now tell you without hesitation, that this fight is entirely about attitude and perspective. Ironically, the hardest part of my treatments so far has been fighting the imagery from chemo and not the chemo itself. I have also been told by many, "You should get into a cancer support group." I know that because I am now so sensitive to my surroundings and suggestions about what others say, there is no way that I will do that. Hearing about someone else's misery will only give me more negative imagery to focus on. My empathy and sensitivity as a musician and teacher is a huge strength..in chemo it is an immense weakness.
On a positive note, I am very excited about Thanksgiving for many reasons. First and foremost, I am thrilled to be able to spend time with my family and my darling brother who I don't see very often. It is also great to be able to spend uninteruppted time with them without worrying about work. I am also very excited for the different wonderful foods and smells from Thanksgiving. I have always loved the traditional turkey dinner with gravy and stuffing. My parents make the most wonderful cornbread stuffing with gravy. When I get to the driveway of their house, I can smell the dinner as soon as I step out of the car.
Even though this entry has been so difficult to write about, I am so glad that I did. It is great to write and get these feelings out of me. Somehow writing and reading the entry removes it from me, puts it on the screen, and I don't feel those things quite as intensely.
Thank you for reading and accompanying me on my journey. Have a wonderful holiday.
Chemosabe
Friday, November 12, 2010
The long walk and chemo #3
Two nights ago (the night before chemo) I was in a pretty dark place emotionally. I really didn't want to face another chemo even though I know it's my only way to a cure. I came home from work and took a nap. I woke up to Zoe screaming bloody murder and throwing a temper tantrum because she didn't get what she wanted for dinner and she was hungry. Zoe is usually a very compliant kid except when it comes to food...she's just like her mother.
Hearing Zoe scream combined with my nervousness about my upcoming chemo sent me over the edge. I took my i-pod and went for a walk...I walked and walked for almost an hour. Since it was 6:15 at night, it was already quite dark out. I didn't bring a flashlight...Just my i-pod, my cell phone, and my leather jacket. No one was out except for the few people coming in from their days at work. The night was just beautiful. It was maybe 65 degrees with a slight breeze and a crescent moon. As I was walking alone, I kept looking at the houses with lights on and people walking around preparing to eat dinner. The houses looked so warm and inviting. I cried and cried for the entire walk.
I kept thinking about the myths about the souls that supposedly walk the earth after they have died because they haven't found peace. No one sees or hears them unless a medium senses their presence..."I see dead people" as Haley Joel Osmont said in "The Sixth Sense." I started to feel like one of those tortured souls alone walking the streets. No one was here to see or talk to me and I was just wandering the streets of my neighborhood. I wondered if this is what it felt like to be dead.
After about 40 minutes into my walk, my son called me on my cell phone and told me to come home and that Zoe was through screaming. Hearing my son's voice snapped me out of my self-pity mode...I was so glad to hear his voice. Soon after, I found my way home.
I had chemo #3 yesterday. I only have one more of the big treatments left and then I'll have 12 of the small ones starting December 23rd. The 3rd chemo went well, but the side-effects seem to be coming on sooner than the last 2 treatments. I had a nurse tell me that I needed to drink 3 quarts of liquid per day and that I had no choice in the matter. If I didn't, I could "burn my bladder." I drank a ton yesterday and even at night, Elliott brought me tea and other drinks (water mixed with fruit juice). I was up in the restroom all night, but I think it did help me today.
More to come,
Chemosabe
Hearing Zoe scream combined with my nervousness about my upcoming chemo sent me over the edge. I took my i-pod and went for a walk...I walked and walked for almost an hour. Since it was 6:15 at night, it was already quite dark out. I didn't bring a flashlight...Just my i-pod, my cell phone, and my leather jacket. No one was out except for the few people coming in from their days at work. The night was just beautiful. It was maybe 65 degrees with a slight breeze and a crescent moon. As I was walking alone, I kept looking at the houses with lights on and people walking around preparing to eat dinner. The houses looked so warm and inviting. I cried and cried for the entire walk.
I kept thinking about the myths about the souls that supposedly walk the earth after they have died because they haven't found peace. No one sees or hears them unless a medium senses their presence..."I see dead people" as Haley Joel Osmont said in "The Sixth Sense." I started to feel like one of those tortured souls alone walking the streets. No one was here to see or talk to me and I was just wandering the streets of my neighborhood. I wondered if this is what it felt like to be dead.
After about 40 minutes into my walk, my son called me on my cell phone and told me to come home and that Zoe was through screaming. Hearing my son's voice snapped me out of my self-pity mode...I was so glad to hear his voice. Soon after, I found my way home.
I had chemo #3 yesterday. I only have one more of the big treatments left and then I'll have 12 of the small ones starting December 23rd. The 3rd chemo went well, but the side-effects seem to be coming on sooner than the last 2 treatments. I had a nurse tell me that I needed to drink 3 quarts of liquid per day and that I had no choice in the matter. If I didn't, I could "burn my bladder." I drank a ton yesterday and even at night, Elliott brought me tea and other drinks (water mixed with fruit juice). I was up in the restroom all night, but I think it did help me today.
More to come,
Chemosabe
Sunday, November 7, 2010
Loneliness 11/7/10
It is amazing to me that I can be interracting with my family or even be in a room full of people and I can feel incredibly lonely. Today was one of those days. I would have never thought that I would end up feeling this way today but I did.
I spent the day with my kids and it was great. I played "Upwords" with my 10 year old son Ethan and he beat the pants off of me. (Upwords is a 3 dimensional game of Scrabble) I talked and laughed with my kids and had a great lunch with them. After lunch my mother, Ethan and I went for a walk and I enjoyed watching Ethan kick a piece of round plastic (it looked like a part left over from a 25 cent toy from a machine) throughout the walk. Kids always amaze me the way that they look at things. Garbage to an adult equals garbage, to a kid, it's a soccer ball.
Right now even with all of that positve and fun interraction, I feel like I'm the only person on earth. My brother calls this feeling "existential loneliness." I guess the best way to describe it is a feeling of no emotion at all or all emotion being drained out of my soul and I'm left with an emptiness...Like I don't have a connection to anything or anyone.
Since my diagnosis, I actually have fewer of these episodes, but when I do get them, they hit me really hard.
I do know one thing even in this state of mind. When I am done with my last chemo treatment on March 10th which is also Ethan's birthday, I will be out of here...I don't know where I will go, but I will be taking a trip somewhere..It may be a cruise, it may be a trip out of the country...Wherever it is I cannot wait....
I'm bustin' out of this and things are going to change.
I spent the day with my kids and it was great. I played "Upwords" with my 10 year old son Ethan and he beat the pants off of me. (Upwords is a 3 dimensional game of Scrabble) I talked and laughed with my kids and had a great lunch with them. After lunch my mother, Ethan and I went for a walk and I enjoyed watching Ethan kick a piece of round plastic (it looked like a part left over from a 25 cent toy from a machine) throughout the walk. Kids always amaze me the way that they look at things. Garbage to an adult equals garbage, to a kid, it's a soccer ball.
Right now even with all of that positve and fun interraction, I feel like I'm the only person on earth. My brother calls this feeling "existential loneliness." I guess the best way to describe it is a feeling of no emotion at all or all emotion being drained out of my soul and I'm left with an emptiness...Like I don't have a connection to anything or anyone.
Since my diagnosis, I actually have fewer of these episodes, but when I do get them, they hit me really hard.
I do know one thing even in this state of mind. When I am done with my last chemo treatment on March 10th which is also Ethan's birthday, I will be out of here...I don't know where I will go, but I will be taking a trip somewhere..It may be a cruise, it may be a trip out of the country...Wherever it is I cannot wait....
I'm bustin' out of this and things are going to change.
Wednesday, November 3, 2010
My fuzzy head and my new wigs
So, I basically have just fuzz on top of my head, almost no leg hair, no arm hair, almost no hair anywhere. I still have my eyebrows and my eyelashes...Getting ready in the morning is a breeze and what little hair there is on top of my head dries as soon as my feet touch the shower mat out of the shower...It turns out my scalp is very sensitive to the touch. (I guess I never realized how sensitive my scalp is because it has always been covered with a lot of very thick hair.) In a nutshell, I look like I have a case of mange and I couldn't give a rat's ass about it.
Yesterday, I bought two wigs online..Both short bobs with bangs. One is a red-headed wig the other is a blonde wig. I plan on wearing them in public..I'm still trying to decide if I will wear them to school. I mean, why not? If I'm dressed professionally, what are they going to do? Fire me for hair color?
Everyday I surprise myself. I never thought I'd say this, but I actually am kind of enjoying the freedom that comes with not having hair. I am actually thinking that when my hair does grow back, I'm going to keep it short so that I have more time to live my life...I mean, why spend time washing, styling, drying, and flat-ironing my hair when I can be out playing, dancing, singing, shopping, sleeping, watching movies, laughing, traveling, eating....etc...
Next chemo is on 11/11. After that one, I will be 3/4 way through the tough treatments..How awesome is that??
Yesterday, I bought two wigs online..Both short bobs with bangs. One is a red-headed wig the other is a blonde wig. I plan on wearing them in public..I'm still trying to decide if I will wear them to school. I mean, why not? If I'm dressed professionally, what are they going to do? Fire me for hair color?
Everyday I surprise myself. I never thought I'd say this, but I actually am kind of enjoying the freedom that comes with not having hair. I am actually thinking that when my hair does grow back, I'm going to keep it short so that I have more time to live my life...I mean, why spend time washing, styling, drying, and flat-ironing my hair when I can be out playing, dancing, singing, shopping, sleeping, watching movies, laughing, traveling, eating....etc...
Next chemo is on 11/11. After that one, I will be 3/4 way through the tough treatments..How awesome is that??
Sunday, October 24, 2010
My Favorite Things
I think that Maria Von Trapp in the movie "Sound of Music" had it right when she sang about her favorite things...."I simply remember my favorite things, and then I don't feel so bad!" I have been feeling so horrible lately. Yesterday, I nearly passed out from dehydration and stomach pains. Today was a little better. At least I was able to get out of the house for a shuffle around the neighborhood with my dad.
I decided I need to write down the things that I love in my life, both large and small..So that when I feel terrible, I can look at my list.
-I love rainy windy cold weather. The kind that keeps me indoors by a fireplace with a book and a cuddly blanket.
-I love the white sands of the Virgin Islands...I also love the palm trees as the sway in the wind and the smell of salt off of the ocean.
-I love good food and restaurants. I love to eat!
-I love my children's laughter and goofy smiles, and how they taste when I give them kisses.
-I love good movies both on DVD and in the theater and the smell of buttered popcorn in the movie theater.
-I love real fall weather with the different colored leaves and the rustling sounds that the leaves make when the wind whips through them.
-I love the smell of chlorine at a swimming pool when I'm on vacation.
-I love a clear night with a full moon.
-I love leaving to go on a trip at 5 a.m. when it's still dark and no one is up yet. It makes me feel like I'm going on a real adventure.
-I love a warm chocolate chip cookie right out of the oven..
-I love a very loud thunderstorm with a lot of lightning and rain..as long as I'm indoors!
-I love taking a shower after a hard work out.
-I love laughing so hard that my stomach hurts, my eyes are running, and my face hurts from smiling.
-I love it when my students win an award. I especially love it when I have a new all-stater in my studio or when my middle school students receive a sweepstakes award.
-I love a hug that seems to last for days.
This is a good starting point..
Have a wonderful evening!
Chemosabe
I decided I need to write down the things that I love in my life, both large and small..So that when I feel terrible, I can look at my list.
-I love rainy windy cold weather. The kind that keeps me indoors by a fireplace with a book and a cuddly blanket.
-I love the white sands of the Virgin Islands...I also love the palm trees as the sway in the wind and the smell of salt off of the ocean.
-I love good food and restaurants. I love to eat!
-I love my children's laughter and goofy smiles, and how they taste when I give them kisses.
-I love good movies both on DVD and in the theater and the smell of buttered popcorn in the movie theater.
-I love real fall weather with the different colored leaves and the rustling sounds that the leaves make when the wind whips through them.
-I love the smell of chlorine at a swimming pool when I'm on vacation.
-I love a clear night with a full moon.
-I love leaving to go on a trip at 5 a.m. when it's still dark and no one is up yet. It makes me feel like I'm going on a real adventure.
-I love a warm chocolate chip cookie right out of the oven..
-I love a very loud thunderstorm with a lot of lightning and rain..as long as I'm indoors!
-I love taking a shower after a hard work out.
-I love laughing so hard that my stomach hurts, my eyes are running, and my face hurts from smiling.
-I love it when my students win an award. I especially love it when I have a new all-stater in my studio or when my middle school students receive a sweepstakes award.
-I love a hug that seems to last for days.
This is a good starting point..
Have a wonderful evening!
Chemosabe
Tuesday, October 19, 2010
19-19-10 Fuck! My scalp hurts!
Yesterday I decided to get the big chop..As in, I had my hair cut in a very short pixie style. Over the weekend, my hair started coming out in handfuls. Even though I still had a ton of hair left on my head, hair started getting in my mouth, in my eyes, and all over my clothing. I would find it practically everywhere I was during the day. My scalp was also killing me from the weight of my hair.
My dad and Elliott were supposed to crop it for me when the time came to cut it, but neither one could bring themselves to make it happen. (They were afraid they'd cut me or make it look bad.) So, my good friend Monica, who I like to call my Catholic sister, got me an appointment with her stylist at a salon called Za. Emma (the owner) opened the salon just for me (it's normally closed on Monday)
My Mom, Elliott, and my childhood friend Arden came with me. Initially I was really afraid, so I assembled my small support group. Along with my wig, I brought my scarves, hats, and other accessories. Emma the stylist was so kind and understanding..She made me feel very comfortable and safe which I really appreciated. I told Elliott that I wanted pictures taken of the entire thing. Everyone thought I was crazy, but I really needed to have those pictures...If I decided later to delete them, at least I'd have that choice.
After Emma washed my hair, she showed me pictures of what she wanted to do to with the style. We both decided that a short pixie cut would be best. She began cutting my hair and it felt so amazing to have the weight gone that had been pulling on my scalp and keeping me up at night. I thought it would be traumatic when it happened, but it was actually liberating. I had Elliott take pictures every step of the way until the hair cut was done. One of the stages on the way to the final look reminded me of the cut Keanu Reeves had when he was in the movie Parenthood. (It was his rebel haircut.) We all ended up laughing and having a good time during the process. When the cut was done, there was so much hair, it looked like a cat curled up on the floor..truly amazing and disgusting.
Today, I wore my wig to school, and I was a little nervous...I have to say, I have never gotten so many compliments on my "hair" in my life. I had students say, "Mrs. Gurwitz, your hair looks great! You look beautiful!" I was amused and flattered.
Unfortunately by the end of the day, my head was killing me from the wig cap gripping my scalp so hard. As soon as I got out of the parking lot at school, I tore that thing off of my head.. By the time I got home, I was in tears from pain. I ended up calling the place where I bought my wig and spoke to the owner who barely speaks English. After about 15 minutes of trying to figure out what he was talking about, I finally realized that I didn't have to wear the wig cap over my head anymore. (A wig cap covers hair so that it will fit under the wig.) Now that my hair is almost gone, the wig cap is no longer necessary. I put the wig back on and I didn't want to scream with agony...Thank you God!!!!!
Tomorrow is the honor band's first concert of the year. I am having visions of my wig flying off into the audience if I get too into the music...Pretty scary thought, but at least no one would be bored, and it is a Halloween concert...I'm thinking I could get away with it.
Truth be told, the short (and now almost gone) hair makes me feel very vulnerable. After I took a shower last night, my head felt cold and my hair looked like little wispy feathers on my small head. I felt like a little bald baby. Next chemo is in two days....
Have a wonderful night everyone :)
My dad and Elliott were supposed to crop it for me when the time came to cut it, but neither one could bring themselves to make it happen. (They were afraid they'd cut me or make it look bad.) So, my good friend Monica, who I like to call my Catholic sister, got me an appointment with her stylist at a salon called Za. Emma (the owner) opened the salon just for me (it's normally closed on Monday)
My Mom, Elliott, and my childhood friend Arden came with me. Initially I was really afraid, so I assembled my small support group. Along with my wig, I brought my scarves, hats, and other accessories. Emma the stylist was so kind and understanding..She made me feel very comfortable and safe which I really appreciated. I told Elliott that I wanted pictures taken of the entire thing. Everyone thought I was crazy, but I really needed to have those pictures...If I decided later to delete them, at least I'd have that choice.
After Emma washed my hair, she showed me pictures of what she wanted to do to with the style. We both decided that a short pixie cut would be best. She began cutting my hair and it felt so amazing to have the weight gone that had been pulling on my scalp and keeping me up at night. I thought it would be traumatic when it happened, but it was actually liberating. I had Elliott take pictures every step of the way until the hair cut was done. One of the stages on the way to the final look reminded me of the cut Keanu Reeves had when he was in the movie Parenthood. (It was his rebel haircut.) We all ended up laughing and having a good time during the process. When the cut was done, there was so much hair, it looked like a cat curled up on the floor..truly amazing and disgusting.
Today, I wore my wig to school, and I was a little nervous...I have to say, I have never gotten so many compliments on my "hair" in my life. I had students say, "Mrs. Gurwitz, your hair looks great! You look beautiful!" I was amused and flattered.
Unfortunately by the end of the day, my head was killing me from the wig cap gripping my scalp so hard. As soon as I got out of the parking lot at school, I tore that thing off of my head.. By the time I got home, I was in tears from pain. I ended up calling the place where I bought my wig and spoke to the owner who barely speaks English. After about 15 minutes of trying to figure out what he was talking about, I finally realized that I didn't have to wear the wig cap over my head anymore. (A wig cap covers hair so that it will fit under the wig.) Now that my hair is almost gone, the wig cap is no longer necessary. I put the wig back on and I didn't want to scream with agony...Thank you God!!!!!
Tomorrow is the honor band's first concert of the year. I am having visions of my wig flying off into the audience if I get too into the music...Pretty scary thought, but at least no one would be bored, and it is a Halloween concert...I'm thinking I could get away with it.
Truth be told, the short (and now almost gone) hair makes me feel very vulnerable. After I took a shower last night, my head felt cold and my hair looked like little wispy feathers on my small head. I felt like a little bald baby. Next chemo is in two days....
Have a wonderful night everyone :)
Saturday, October 16, 2010
10-16-10 The history of my hair
I haven't been writing on the blog for the last few days because I have been feeling really good for the most part and I have been out enjoying life. The horrible bone pain finally disappeared and I can't tell you how grateful I was to have that gone! It was the strangest thing. I was talking and laughing on the phone with a friend of mine from college for about an hour. We hadn't spoken in about 20 years and it was great to catch up. When the conversation was over, the pain was gone. Now, the pain in general had been getting a lot better before the conversation, but I still had a little discomfort. After the conversation, I felt completely normal as if nothing had happened and the pain hasn't returned since. It seems that endorphines really are great pain killers!!!!
The only strange side effect that I have had lately has been with my hair. A couple of days ago, I had the most excruciating scalp pain that I believe was brought on by wearing a clip. (My hair cannot be styled especially with a flat iron. According to my doctor, the hair becomes brittle with chemo and it can break while styling. I certainly don't want to be burned..) I had to take a darvocet just to go to sleep b/c I couldn't even lie down on my pillow. It turns out that the pain is a precursor to losing hair. I have noticed a little shedding but no more than usual. I have been told that cutting my hair off (a crew cut not a close shave) would alleviate the scalp pain. I still have plenty of hair, but I am now facing the dilemma: Am I ready to start wearing wigs, hats and scarves? Am I ready for the stares and confused looks of my students? The answer to those questions is no. I am hoping that I will just know when it's time. I also have a concert on Wednesday and I will be in front of people. I think I will try to hang in there until after the concert.
All of my life part of my identity has been my very thick dark hair. When I was a little girl, my hair was very curly and I used to wear it in ponytails that made ringlets. When I was in middle school, I wore it in a Dorothy Hamil style bowl cut. Since it was so thick, it stood out from my head. Many of my peers called me mushroom. I was also thin at the time and very flat chested, giving my overall appearance as a mushroom. In college, I grew my hair long and wore it curly. I received so many compliments on my hair at that time and it really got me noticed by the boys. I think most of my dating life in college and during my masters degree was b/c of my beautiful dark brown hair.
In my late 20's, I started to gray and began coloring it when I was about 27. I wore it in many different styles. It was very short when I met my husband, I grew it long again, and then recently I cut it into a bob which I enjoyed very much. (The short bob was professional looking and it was easy to take care of.)
I am now entering into a phase that I have never dealt with before..The phase of no hair, wigs, hats and scarves. Even though my hair has always been such a huge part of my physical appearance my whole life, losing it doesn't seem to matter as much to me as I thought it would. Even though I have always been into fashion, hair, and makeup, I have never considered myself to be vain. I have never spent hours in front of the mirror admiring myself or worrying that I don't look right. Most of the time, I fix my hair, throw on some clothes and makeup and run out the door.
I think my real conflict is, how will my hair loss affect how my own children and my students. I have spoken openly with my kids about the hair loss and how I will be wearing wigs, hats, scarves, etc. Ironically, my son Ethan is the one that is the most upset by my impending hair loss. When I spoke to him last night, I told him first of all, that it's just hair and it will grow back. I assured him that I'm not worried about my hair at all and that my main concern was how he and Zoe felt about seeing me so physically different. Ethan told me that once I cut it off, he would feel more comfortable if I always had something covering my head when we were around eachother. I told him that I could do that for him and it was not a problem. The kids and I also decided that we would look for a crazy wig for me for Halloween.
On a completely different topic, I have had some of the best days with my children and my students lately. I have really been enjoying working with my students, laughing with them, and getting to know them. Band has been a lot of fun and a great outlet for me. My own children are so precious. I love their little smiles, their senses of humor and their perspectives. I find myself hugging and kissing my babies a lot more than I used to. Even when they are having bad days or even moments, I still look at them with wonder. I cannot believe that they are mine and how truly blessed I am to have them in my life.
Have a great weekend my friends!!
The only strange side effect that I have had lately has been with my hair. A couple of days ago, I had the most excruciating scalp pain that I believe was brought on by wearing a clip. (My hair cannot be styled especially with a flat iron. According to my doctor, the hair becomes brittle with chemo and it can break while styling. I certainly don't want to be burned..) I had to take a darvocet just to go to sleep b/c I couldn't even lie down on my pillow. It turns out that the pain is a precursor to losing hair. I have noticed a little shedding but no more than usual. I have been told that cutting my hair off (a crew cut not a close shave) would alleviate the scalp pain. I still have plenty of hair, but I am now facing the dilemma: Am I ready to start wearing wigs, hats and scarves? Am I ready for the stares and confused looks of my students? The answer to those questions is no. I am hoping that I will just know when it's time. I also have a concert on Wednesday and I will be in front of people. I think I will try to hang in there until after the concert.
All of my life part of my identity has been my very thick dark hair. When I was a little girl, my hair was very curly and I used to wear it in ponytails that made ringlets. When I was in middle school, I wore it in a Dorothy Hamil style bowl cut. Since it was so thick, it stood out from my head. Many of my peers called me mushroom. I was also thin at the time and very flat chested, giving my overall appearance as a mushroom. In college, I grew my hair long and wore it curly. I received so many compliments on my hair at that time and it really got me noticed by the boys. I think most of my dating life in college and during my masters degree was b/c of my beautiful dark brown hair.
In my late 20's, I started to gray and began coloring it when I was about 27. I wore it in many different styles. It was very short when I met my husband, I grew it long again, and then recently I cut it into a bob which I enjoyed very much. (The short bob was professional looking and it was easy to take care of.)
I am now entering into a phase that I have never dealt with before..The phase of no hair, wigs, hats and scarves. Even though my hair has always been such a huge part of my physical appearance my whole life, losing it doesn't seem to matter as much to me as I thought it would. Even though I have always been into fashion, hair, and makeup, I have never considered myself to be vain. I have never spent hours in front of the mirror admiring myself or worrying that I don't look right. Most of the time, I fix my hair, throw on some clothes and makeup and run out the door.
I think my real conflict is, how will my hair loss affect how my own children and my students. I have spoken openly with my kids about the hair loss and how I will be wearing wigs, hats, scarves, etc. Ironically, my son Ethan is the one that is the most upset by my impending hair loss. When I spoke to him last night, I told him first of all, that it's just hair and it will grow back. I assured him that I'm not worried about my hair at all and that my main concern was how he and Zoe felt about seeing me so physically different. Ethan told me that once I cut it off, he would feel more comfortable if I always had something covering my head when we were around eachother. I told him that I could do that for him and it was not a problem. The kids and I also decided that we would look for a crazy wig for me for Halloween.
On a completely different topic, I have had some of the best days with my children and my students lately. I have really been enjoying working with my students, laughing with them, and getting to know them. Band has been a lot of fun and a great outlet for me. My own children are so precious. I love their little smiles, their senses of humor and their perspectives. I find myself hugging and kissing my babies a lot more than I used to. Even when they are having bad days or even moments, I still look at them with wonder. I cannot believe that they are mine and how truly blessed I am to have them in my life.
Have a great weekend my friends!!
Sunday, October 10, 2010
10-10-10 My interesting diet
I still have some aches and pains in my legs and pelvis today, but it seems overall to be getting better. I went for a walk 2x today. The first time hurt so badly, I was brought to tears and my mother had to get the car to pick me up. My evening walk went much better..No real pain, just soreness. So that's got to be an improvement, right?
I wanted to talk a little bit about my diet lately. All refined sugar and carbohydrates make my heart palpitate and make me nauseous. For a while, I was only eating meat, cheese, nuts, and salad because that's all I could tolerate. Just today, I added fruit and I felt fine. I simply have no desire to eat bread, rice, cake, cookies, chocolate, any kind of dessert, or coffee.. All of those foods used to be my favorites and now I can no longer tolerate them. Very sweet foods taste very intense. I had a ripe banana today as a snack..It gave me the worst heartburn and it tasted like it had been dipped in honey. It was really disgusting...
Since I have been eliminating bad carbs from my diet, I have been feeling really pretty good considering I'm going through chemo. When I'm awake, I have a lot more energy and I'm sleeping better at night. If it wasn't for the leg pain, I would be feeling terrific. I am actually craving a very healthy diet...I never have that...Please let me know if you have any insight into this, because it is confusing and fascinating.
Emotionally today I have been pretty depressed. I think the pain is finally starting to get to me. Intense or constant pain is the one thing that I have a really hard time talking myself out of. I am hoping tomorrow is a better day.
Good night my friends and have a glorious evening.
I wanted to talk a little bit about my diet lately. All refined sugar and carbohydrates make my heart palpitate and make me nauseous. For a while, I was only eating meat, cheese, nuts, and salad because that's all I could tolerate. Just today, I added fruit and I felt fine. I simply have no desire to eat bread, rice, cake, cookies, chocolate, any kind of dessert, or coffee.. All of those foods used to be my favorites and now I can no longer tolerate them. Very sweet foods taste very intense. I had a ripe banana today as a snack..It gave me the worst heartburn and it tasted like it had been dipped in honey. It was really disgusting...
Since I have been eliminating bad carbs from my diet, I have been feeling really pretty good considering I'm going through chemo. When I'm awake, I have a lot more energy and I'm sleeping better at night. If it wasn't for the leg pain, I would be feeling terrific. I am actually craving a very healthy diet...I never have that...Please let me know if you have any insight into this, because it is confusing and fascinating.
Emotionally today I have been pretty depressed. I think the pain is finally starting to get to me. Intense or constant pain is the one thing that I have a really hard time talking myself out of. I am hoping tomorrow is a better day.
Good night my friends and have a glorious evening.
Friday, October 8, 2010
10-8-10 Giving birth to 5000 white blood cells
Today I went to work and stayed the whole day...Ok, I left campus for an hour or so to eat and rest...I am amazed that I was able to make it through today. I am no longer nauseous, tired, or weak in any way. The side effect of the day was excruciating pain in my thigh bones and the bones between my wrist and elbows.
It started yesterday. I was feeling achy and it was hard to move around freely. I thought it was just my body reacting to everything it had been through and didn't think much of it. As the day went on, I started feeling more and more pain. It started to feel like my thigh and arm bones were being split in half. Walking was becoming more and more difficult. I was also worried that I would spontaneously scream in the middle of class. I spoke to the nurse at my doctor's office about another issue at first. She called to tell me that I am anemic/iron deficient and need an iron supplement. She thought that would help with my fatigue. The nurse also told me that other than the anemia, my white blood count and platelets were quite excellent for where I was in the chemo process. A week before, I had a shot called neulasta that is supposed to boost white blood cells for immunity. I told the nurse I was getting unexplicably achy and it was getting hard to walk. She told me it was the neulasta shot really kicking in and that it affects the big bones in the body. One of the side effects is achyness...That is the understatement of the century.
I decided that the pain I felt today was akin to giving birth..My bones gave birth to 5000 white blood cells. If I knew it was going to be this painful, I would have gotten an epidural and had a baby shower before hand! (I should at least get some fucking gifts out of this!!) My parents came to pick me up for lunch at school. By the time they got me in the car (which I could barely do myself), I was a slobbering bawling mess. They got me back to their house, fed me lunch and I took an aleve and a darvocet.
Eventually the meds kicked in after about 40 minutes and I actually went back to work. I had a lot to do and fuck this cancer.
I don't always tell my parents, but I love them and appreciate everything they do for me. They are so devoted to me and my family and I know that they will do anything to help me through this process. I am so grateful that they live so close and can be there when I need them...
I am so glad that I went to work today because I had a joyous day with my students. My beginner flute class had the best chair test that I have heard them play all year, and then they had recital day. In recital day, each kid gets up in front of the class, announces who she is, what song she is going to play (her choice), performs, and then all the kids are required to clap politely. My baby flutes played so beautifully. One trio played a round of Frere Jacques with beautiful vibrato.
One of the most obnoxious kids that I have in my clarinet class came up to me after school to check on me. He said he was worried about me and missed me during class. Now, I have my own personal children that I love more than anything in this world...But I have to say, a very close second are my darling middle school babies. I really love them too.
I found out today that I can overcome a lot of things...Even giving birth to 5000 white blood cells in the middle of class..I also found out how much I love my job and my students even though I complain a lot. Really, when I put everything in perspective, teaching middle school band is like being in the Bahamas compared to being sick and in bed. I really do have a lot to be thankful for.
It started yesterday. I was feeling achy and it was hard to move around freely. I thought it was just my body reacting to everything it had been through and didn't think much of it. As the day went on, I started feeling more and more pain. It started to feel like my thigh and arm bones were being split in half. Walking was becoming more and more difficult. I was also worried that I would spontaneously scream in the middle of class. I spoke to the nurse at my doctor's office about another issue at first. She called to tell me that I am anemic/iron deficient and need an iron supplement. She thought that would help with my fatigue. The nurse also told me that other than the anemia, my white blood count and platelets were quite excellent for where I was in the chemo process. A week before, I had a shot called neulasta that is supposed to boost white blood cells for immunity. I told the nurse I was getting unexplicably achy and it was getting hard to walk. She told me it was the neulasta shot really kicking in and that it affects the big bones in the body. One of the side effects is achyness...That is the understatement of the century.
I decided that the pain I felt today was akin to giving birth..My bones gave birth to 5000 white blood cells. If I knew it was going to be this painful, I would have gotten an epidural and had a baby shower before hand! (I should at least get some fucking gifts out of this!!) My parents came to pick me up for lunch at school. By the time they got me in the car (which I could barely do myself), I was a slobbering bawling mess. They got me back to their house, fed me lunch and I took an aleve and a darvocet.
Eventually the meds kicked in after about 40 minutes and I actually went back to work. I had a lot to do and fuck this cancer.
I don't always tell my parents, but I love them and appreciate everything they do for me. They are so devoted to me and my family and I know that they will do anything to help me through this process. I am so grateful that they live so close and can be there when I need them...
I am so glad that I went to work today because I had a joyous day with my students. My beginner flute class had the best chair test that I have heard them play all year, and then they had recital day. In recital day, each kid gets up in front of the class, announces who she is, what song she is going to play (her choice), performs, and then all the kids are required to clap politely. My baby flutes played so beautifully. One trio played a round of Frere Jacques with beautiful vibrato.
One of the most obnoxious kids that I have in my clarinet class came up to me after school to check on me. He said he was worried about me and missed me during class. Now, I have my own personal children that I love more than anything in this world...But I have to say, a very close second are my darling middle school babies. I really love them too.
I found out today that I can overcome a lot of things...Even giving birth to 5000 white blood cells in the middle of class..I also found out how much I love my job and my students even though I complain a lot. Really, when I put everything in perspective, teaching middle school band is like being in the Bahamas compared to being sick and in bed. I really do have a lot to be thankful for.
Wednesday, October 6, 2010
10/6/10--Weakness and rage
I went to work today early for morning rehearsal. I ended up being shuffled by a couple of teachers to the nurse's office because I got really weak and started seeing stars. When I was a kid and I didn't feel well, I would go the the nurse's office, the nurse would call my mom or dad and I would get picked up from school. The same thing happened today. The nurse called my dad and he picked me up at school. Yet another episode of feeling like a helpless child has transpired in this fucked up situation.
I have gone from feeling guilty to feeling enraged. Feeling enraged in a very weak body is a new and bizarre feeling. I want to burst out of this eggshell body of mine and rage against this weakness. But, I don't have the energy to do anything except shuffle around. I'm not sure what to do with this anger and frustration on the inside. I used to kick box or ride my bike or just scream bloody murder when I would feel anger. (The bloody murder screaming was usually accompanied by the hurling of an object..Usually a portable phone or an alarm clock.) I have no outlet for my rage except to write about it on this blog and continue to shuffle around in intervals.
I am pissed, no I am fucking pissed that I have to feel like a helpless infant. I am angry that I can't go to work and do my job and be with my students. I am angry that I am not able to ride my bike even around the block. I am angry that people feel sorry for me and that my parents are taking care of me. So much of my independence is gone and I am enraged!
I don't know if I believe in God. I wrestle with that all of the time and I am especially wrestling with that now. I know there are people that have it so much worse than I do. My cancer will be curable..So many others aren't as lucky. Even so, why in the hell is this happening? Will all of these questions be revealed in time? And, do I really give a shit what God thinks?
When I got home today, I sat in bed just watching t.v. One of my favorite movies of all time was on called "Billy Elliot." For those of you who don't know, it's about an 11 year old kid who ends up being a dancing genius. He grew up with a family that didn't know anything about the ballet and certainly didn't appreciate it. The boy's brother and father thought that anyone who dances is a "puff" or is gay. The kid had a wonderful teacher who worked with him and brought out the best in him. Billy ended up attending the Royal Ballet in London. At the end of the movie is a very moving scene with Billy dancing to "Swan Lake" as the lead swan.
This movie kept making me think about a couple of things. First, how valuable it is to be a teacher, especially when I get that special student that I can work with to make into the best of the best. Billy is that age that I work with at the middle school. I love seeing the potential in a student and I have the ability to see it and mold it even at that awkward age. The other thing I kept thinking about is how the learning process is just that..a process. This kid started out as an awkward duckling and became the swan at the end of the movie. Maybe this disease is a process for me. Right now, I am the ugly duckling. At the end, maybe I'll grow into a beautiful swan. More beautiful and wiser than before.
I have gone from feeling guilty to feeling enraged. Feeling enraged in a very weak body is a new and bizarre feeling. I want to burst out of this eggshell body of mine and rage against this weakness. But, I don't have the energy to do anything except shuffle around. I'm not sure what to do with this anger and frustration on the inside. I used to kick box or ride my bike or just scream bloody murder when I would feel anger. (The bloody murder screaming was usually accompanied by the hurling of an object..Usually a portable phone or an alarm clock.) I have no outlet for my rage except to write about it on this blog and continue to shuffle around in intervals.
I am pissed, no I am fucking pissed that I have to feel like a helpless infant. I am angry that I can't go to work and do my job and be with my students. I am angry that I am not able to ride my bike even around the block. I am angry that people feel sorry for me and that my parents are taking care of me. So much of my independence is gone and I am enraged!
I don't know if I believe in God. I wrestle with that all of the time and I am especially wrestling with that now. I know there are people that have it so much worse than I do. My cancer will be curable..So many others aren't as lucky. Even so, why in the hell is this happening? Will all of these questions be revealed in time? And, do I really give a shit what God thinks?
When I got home today, I sat in bed just watching t.v. One of my favorite movies of all time was on called "Billy Elliot." For those of you who don't know, it's about an 11 year old kid who ends up being a dancing genius. He grew up with a family that didn't know anything about the ballet and certainly didn't appreciate it. The boy's brother and father thought that anyone who dances is a "puff" or is gay. The kid had a wonderful teacher who worked with him and brought out the best in him. Billy ended up attending the Royal Ballet in London. At the end of the movie is a very moving scene with Billy dancing to "Swan Lake" as the lead swan.
This movie kept making me think about a couple of things. First, how valuable it is to be a teacher, especially when I get that special student that I can work with to make into the best of the best. Billy is that age that I work with at the middle school. I love seeing the potential in a student and I have the ability to see it and mold it even at that awkward age. The other thing I kept thinking about is how the learning process is just that..a process. This kid started out as an awkward duckling and became the swan at the end of the movie. Maybe this disease is a process for me. Right now, I am the ugly duckling. At the end, maybe I'll grow into a beautiful swan. More beautiful and wiser than before.
Tuesday, October 5, 2010
10-5-10 In bed almost all day
I fully planned on going to work today, but I just couldn't. The nausea was bad when I woke up and it was finally stopped by phynergan, an anti-nausea medication. The medicine's side-effect is sleepiness. I think that side-effect combined with the side effect of the chemo made it almost impossible to get out of bed. I have only been up to eat, and go to the bathroom. I even kept the phones and remotes close to the bed. I had so much to do at work today and it is always bothersome to me when I am not at school. As a teacher, when I miss even a day, it seems like I have actually missed a week with my students. I keep telling myself that it hasn't even been a week since my chemo treatment and I need to give myself a break.
One of the hardest things that I have had to deal with during this experience with cancer is guilt. I am constantly battling these issues, "What did I do to get this disease?" "I must have done something to deserve this." My physical background is not really conducive to getting cancer especially at such an early age. I have no history of breast cancer (although my grandmother had ovarian cancer in her 70's and there may be a link), I have never smoked a cigarette in my life, I rarely if ever drink alcohol, I have never taken birth control pills, I started my period late, and I breast fed both of my kids. All of these factors should lead to a cancer free existence. Yet in my case, it didn't. I keep wondering...is this karma coming around to bite me in the ass for something I did in my past?
I have heard my whole life, to live each day like it's your last. I don't know if I ever really understood that statement until I got my diagnosis. I don't know if anyone really ever can unless he/she is faced with a life-threatening situation. For many years, I have felt like I have been living life through gauze..Everything is blurry and just not sharp. I haven't been enjoying my life and really enjoying my family especially my children. Since my diagnosis, I feel and notice everything. Every day I am sad that I have to live with this and put my family and friends through this illness..At the same time, this may be the first time in my life that I'm actually living..It has been a life-altering experience if nothing else.
One of the hardest things that I have had to deal with during this experience with cancer is guilt. I am constantly battling these issues, "What did I do to get this disease?" "I must have done something to deserve this." My physical background is not really conducive to getting cancer especially at such an early age. I have no history of breast cancer (although my grandmother had ovarian cancer in her 70's and there may be a link), I have never smoked a cigarette in my life, I rarely if ever drink alcohol, I have never taken birth control pills, I started my period late, and I breast fed both of my kids. All of these factors should lead to a cancer free existence. Yet in my case, it didn't. I keep wondering...is this karma coming around to bite me in the ass for something I did in my past?
I have heard my whole life, to live each day like it's your last. I don't know if I ever really understood that statement until I got my diagnosis. I don't know if anyone really ever can unless he/she is faced with a life-threatening situation. For many years, I have felt like I have been living life through gauze..Everything is blurry and just not sharp. I haven't been enjoying my life and really enjoying my family especially my children. Since my diagnosis, I feel and notice everything. Every day I am sad that I have to live with this and put my family and friends through this illness..At the same time, this may be the first time in my life that I'm actually living..It has been a life-altering experience if nothing else.
Monday, October 4, 2010
10-4-10 back to work and the miracle of hot sauce
Today I went to work...It was seriously one of the hardest things I have ever had to do in my life physically. I didn't even want to go except that my parents and Elliott really pushed me to go. They said, if you can't make it through the whole day, then just go home..But at least try it. The morning was pure hell. I felt queasy, weak, and nauseous. I ended up having someone walk me to the nurse's office so that I could have a snack. I can't eat large meals b/c of the nausea..As a result, I get low blood sugar if I don't eat regularly. Anyone who is a teacher knows that it's hard to stop everything once you've started teaching to have a little snack. At around 10, my dad brought me potato and egg tacos from taco cabana. I ate one without putting hot sauce on it for fear it would irritate my stomach. I started feeling better. I kept smelling the hot sauce throughout the morning as well as the other taco. The hot sauce was tantalizing. I thought it was my nose playing tricks on me. By lunchtime, I could no longer stand it and I ate the remaining taco with some hot sauce. It tasted amazing and it cleared up my nausea immediately. I actually loved the feeling of the hot sauce on my tongue. Weird...
By the end of the day, I was exhausted, but I was proud that I made it through. I did leave a little bit early from last period, but not that much. Tonight, I am going for a walk even though I am still queasy. Whenever I feel terrible, I tell myself that the medicine is working. Yes, it's killing good cells, but it's killing the cancerous ones too. Although the cancer I have was caught early and removed, it has a high rate of recurrance. I have to take this seriously and I have to complete the treatment. I am determined to get through this.
After my surgery was completed and I went home, I began the recovery process. I had to sleep in a recliner for 2 months. I am a horrible sleeper as it is and I have neck problems. I had a very sleepless two months. There were times that I cheated and slept on my side b/c I couldn't stand it any longer. I would take walks around the house and outside. Elliott would shower with me for a while since I couldn't raise my arms. He would wash my hair and help me in and out of the shower. If Elliott wasn't around, my mother would keep me company while I bathed.There were times that I couldn't take care of my toilet needs and needed help with that too. I am the head of a large band program, a mother, and a wife. I have many responsibilities in my life. And here I was...after the surgery...a helpless child again..being bathed and wiped. It was definitely a piece of humble pie. It made me realize how much I take my independence for granted and how quickly it can be taken away.
I ended up having another surgery a few weeks later. One of the pathology reports came back that one of the borders came back too close to the skin. It is imperative that when cancer is removed that there are clean borders around the site. I was devastated to hear that I had to have another surgery. It turned out that there was cancer still there but the borders were cleaned out and I had clean margins. Anything that was left would have been microscopic and would be taken care of by the chemotherapy.
Tomorrow is another day. I am still feeling some stomach issues tonight. I am hoping a walk will take care of that. Have a wonderful evening my friends
--Chemosabe
By the end of the day, I was exhausted, but I was proud that I made it through. I did leave a little bit early from last period, but not that much. Tonight, I am going for a walk even though I am still queasy. Whenever I feel terrible, I tell myself that the medicine is working. Yes, it's killing good cells, but it's killing the cancerous ones too. Although the cancer I have was caught early and removed, it has a high rate of recurrance. I have to take this seriously and I have to complete the treatment. I am determined to get through this.
After my surgery was completed and I went home, I began the recovery process. I had to sleep in a recliner for 2 months. I am a horrible sleeper as it is and I have neck problems. I had a very sleepless two months. There were times that I cheated and slept on my side b/c I couldn't stand it any longer. I would take walks around the house and outside. Elliott would shower with me for a while since I couldn't raise my arms. He would wash my hair and help me in and out of the shower. If Elliott wasn't around, my mother would keep me company while I bathed.There were times that I couldn't take care of my toilet needs and needed help with that too. I am the head of a large band program, a mother, and a wife. I have many responsibilities in my life. And here I was...after the surgery...a helpless child again..being bathed and wiped. It was definitely a piece of humble pie. It made me realize how much I take my independence for granted and how quickly it can be taken away.
I ended up having another surgery a few weeks later. One of the pathology reports came back that one of the borders came back too close to the skin. It is imperative that when cancer is removed that there are clean borders around the site. I was devastated to hear that I had to have another surgery. It turned out that there was cancer still there but the borders were cleaned out and I had clean margins. Anything that was left would have been microscopic and would be taken care of by the chemotherapy.
Tomorrow is another day. I am still feeling some stomach issues tonight. I am hoping a walk will take care of that. Have a wonderful evening my friends
--Chemosabe
Sunday, October 3, 2010
10/3/10--Chemo-sabe
The shot that I need to boost my immunity, called neulasta, has made me feel like I have the flu times 10. It is supposed to boost white blood count from the bone marrow so that I can fight infection better. As a result, I am sore all over..Bones, muscles, even my ears hurt to the touch. There has been two days of this, but this morning seems slightly better. I am hoping with breakfast and another walk that I'll loosen up. Elliott, my parents, my brother, my children, and my friends have been instrumental in helping me get through this. Knowing that people are behind me has meant everything..
When I woke up from the surgery, I was already placed in a surgical bra and abdominal binder. Of course, the only thing I could think of was how I wanted a sandwich. The nurses told me that I couldn't eat anything solid until I passed gas. I was hooked up to a couple of different IV's and these leg things that kept circulation going during and after surgery. Every hour, the nurses would come by, check my vitals, and the "flap" to make sure that it was still alive. They would literally put a small microphone up to the flaps and listen for the blood flow. It reminded me of when I was pregnant and the nurses would check the baby's heartbeat. After a few hours, they would check every 2, then every 4...The nurses and doctors were very pleased with how well my surgery went and how little bruising I had. I was afraid to look at my new body and didn't actually look until the day I left the hospital.
I had many visitors while at the hospital. Some of them were band parents and their kids...friends, and of course family. I received many phone calls, cards, letters, and messages on facebook. I had many beautiful flowers sent, books, etc...The nurses on that floor were some of the most amazing people I have ever met. They were so patient, sensitive, and kind. In my opinion, they are like angels on earth. Even now when I think about it, I have no idea how they put up with me.
My wonderful mother is here with me now, so I am going to sign off. She is going to make me breakfast and take me for my morning walk. She thinks that she is a terrible nurse, but she is the best.
When I woke up from the surgery, I was already placed in a surgical bra and abdominal binder. Of course, the only thing I could think of was how I wanted a sandwich. The nurses told me that I couldn't eat anything solid until I passed gas. I was hooked up to a couple of different IV's and these leg things that kept circulation going during and after surgery. Every hour, the nurses would come by, check my vitals, and the "flap" to make sure that it was still alive. They would literally put a small microphone up to the flaps and listen for the blood flow. It reminded me of when I was pregnant and the nurses would check the baby's heartbeat. After a few hours, they would check every 2, then every 4...The nurses and doctors were very pleased with how well my surgery went and how little bruising I had. I was afraid to look at my new body and didn't actually look until the day I left the hospital.
I had many visitors while at the hospital. Some of them were band parents and their kids...friends, and of course family. I received many phone calls, cards, letters, and messages on facebook. I had many beautiful flowers sent, books, etc...The nurses on that floor were some of the most amazing people I have ever met. They were so patient, sensitive, and kind. In my opinion, they are like angels on earth. Even now when I think about it, I have no idea how they put up with me.
My wonderful mother is here with me now, so I am going to sign off. She is going to make me breakfast and take me for my morning walk. She thinks that she is a terrible nurse, but she is the best.
Saturday, October 2, 2010
Saturday, 10-1-10 chemo hell
Been feeling like I have the flu for the past 24 hours. Yesterday afternoon, I went to the cancer clinic to get a shot of neulasta. It's supposed to stimulate my bone marrow to produce more white blood cells so that I can fight infection better. One of the side effects is achy joints..Well, I have that side effect..I took all my morning meds. Once they settle in, I plan on taking a short walk either on a treadmill or around the block...or maybe I'll shuffle around..Either way, I'm going...Fuck this cancer..It can't have me.
Friday, October 1, 2010
10-1-10--recounting the surgery and today's status
My surgery was August 5, 2010 at Methodist Hospital in San Antonio, Texas. I got up at 4:30 a.m. and I had to be at the hospital by 6 a.m. My brother Jon spent the night at my house and Elliott of course was there. (The kids had decided that it would be best if they stayed with their Aunts, Uncles, and cousins in Bastrop while I was in the hospital. They came back 5 days later when I came home.) I was not allowed to eat or drink anything after midnight before the surgery and for two weeks prior to surgery, I was not allowed to take any asperin products or ibuprofen. I was not allowed to drink alcohol, have chocolate or any kind or caffeinated products (or decaf products..No decaf coffee) or my beloved migraine medication frova. (That was the hardest one to give up.) Since I don't take asperin, drink alcohol, or smoke, I did not feel any withdrawls there.
I arrived at Methodist with my parents, brother, and Elliott at 6 a.m. I was checked in, I signed a form stating that I had a will..(kind of scary) and then they took me upstairs where I had my blood pressure and other vitals taken. From there, I was given a gown and booties, and a hair net. (The afternoon before, I had to have an injection of radioactive isotopes to show where there could be cancerous nodes..These nodes would be located during the surgery.) After I got into my surgical attire, I was given an IV with saline to start with. I signed more paperwork and then my family came in. I was wheeled to the pre-op room where I spoke to the anesthesiologist who was a wonderful and kind woman. I spoke to both my general and plastic surgeons before so that I could know further what was happening during the surgery. My plastic surgeon then marked up my torso and breasts with a sharpie. He asked me if I wanted a breast lift, to which I answered, "Make them nice and perky please!" He held my hands and we said a little prayer...After the surgeons and other doctors had left, the nurse told me that they would now put the sedative in my IV. As soon as they began wheeling me into the OR, I asked my brother, "Is this ok???" I was already starting to feel the effects of the sedative. When I was in the OR, the nurses moved me on top of the operating table and by that time, I couldn't do anything except lay there like a sack of potatoes. I told the nurses in a slurred voice that I was nervous and could they talk to me a little bit. I told them that when this was over with, I wanted to go to Disney World. They said that would be fun wouldn't it? Then they asked me what I did for a living. I told them I was a middle school band director...One of them said, I used to play the clarinet. That's the last thing I remember until I woke up.
Now, my brother Jon and I made a deal before the surgery..I was terrified that I would not ever wake up from the surgery. So he said that as soon as I woke up, he would be there and he would say, "I told you so." And it would be my line to say "Fuck you mother fucker." As drunk as I was when I woke up, I remembered my lines...The next thing I asked for was a sandwich, because being asleep for 91/2 hours plus no eating the night before is enough to make a girl pretty hungry!! While I was in the recovery room, I was in and out of consciousness. I remember saying, "mum mum mum mum mum I want my mommy." over and over again. I would then realize what I was doing and ask what was going on..Then I would start again with the "mum mum mum..." again. A friend of mine when she woke up after her surgery thought she was 5 years old. She apparently looked at her husband and wanted to know who he was. I wonder if there is some kind of regression that goes on during surgery toward childhood. My friend's surgery wasn't as long as mine...she only was 5 when she woke up..Since mine was a 9 1/2 hour surgery, perhaps I was regressed to a nine month old or younger?
As for today (10-1-10)....I was having serious side effects from something...I had tingling all over and I was panicking from it..It turns out it's my steroid, and I don't have to take it anymore, since my new chemo won't require it..Oh happy day!!!
More later my dear friends!!
Em
I arrived at Methodist with my parents, brother, and Elliott at 6 a.m. I was checked in, I signed a form stating that I had a will..(kind of scary) and then they took me upstairs where I had my blood pressure and other vitals taken. From there, I was given a gown and booties, and a hair net. (The afternoon before, I had to have an injection of radioactive isotopes to show where there could be cancerous nodes..These nodes would be located during the surgery.) After I got into my surgical attire, I was given an IV with saline to start with. I signed more paperwork and then my family came in. I was wheeled to the pre-op room where I spoke to the anesthesiologist who was a wonderful and kind woman. I spoke to both my general and plastic surgeons before so that I could know further what was happening during the surgery. My plastic surgeon then marked up my torso and breasts with a sharpie. He asked me if I wanted a breast lift, to which I answered, "Make them nice and perky please!" He held my hands and we said a little prayer...After the surgeons and other doctors had left, the nurse told me that they would now put the sedative in my IV. As soon as they began wheeling me into the OR, I asked my brother, "Is this ok???" I was already starting to feel the effects of the sedative. When I was in the OR, the nurses moved me on top of the operating table and by that time, I couldn't do anything except lay there like a sack of potatoes. I told the nurses in a slurred voice that I was nervous and could they talk to me a little bit. I told them that when this was over with, I wanted to go to Disney World. They said that would be fun wouldn't it? Then they asked me what I did for a living. I told them I was a middle school band director...One of them said, I used to play the clarinet. That's the last thing I remember until I woke up.
Now, my brother Jon and I made a deal before the surgery..I was terrified that I would not ever wake up from the surgery. So he said that as soon as I woke up, he would be there and he would say, "I told you so." And it would be my line to say "Fuck you mother fucker." As drunk as I was when I woke up, I remembered my lines...The next thing I asked for was a sandwich, because being asleep for 91/2 hours plus no eating the night before is enough to make a girl pretty hungry!! While I was in the recovery room, I was in and out of consciousness. I remember saying, "mum mum mum mum mum I want my mommy." over and over again. I would then realize what I was doing and ask what was going on..Then I would start again with the "mum mum mum..." again. A friend of mine when she woke up after her surgery thought she was 5 years old. She apparently looked at her husband and wanted to know who he was. I wonder if there is some kind of regression that goes on during surgery toward childhood. My friend's surgery wasn't as long as mine...she only was 5 when she woke up..Since mine was a 9 1/2 hour surgery, perhaps I was regressed to a nine month old or younger?
As for today (10-1-10)....I was having serious side effects from something...I had tingling all over and I was panicking from it..It turns out it's my steroid, and I don't have to take it anymore, since my new chemo won't require it..Oh happy day!!!
More later my dear friends!!
Em
9/30/10 the first chemo treatment
I woke up this morning with a 99.5 fever, flushed, and a sore throat. I was worried that I wouldn't be able to be treated for my first chemo. I spoke to my doctor and she said to come in anyway. By the time I got in there, I didn't have a fever, but my throat was red. The doctor said she thought it was a little virus, but if my throat still felt sore, I should take the day off the next day.
So, I went in for the treatments with Elliott, and my parents with me. I packed everything but the kitchen sink since the treatments were going to take a long time for the first one. (The nurses go slowly to check for allergic reactions.) The first IV they gave me was full of steroids, saline and anti-nausea medication. After that was over, I received the first chemo drug in a syringe, adraimycin. It is red in color and it makes the person pee red for a day or so afterward...No reaction from that one. After that, they flushed me with saline and I began the second drug called cytoxin . While having this drug, I have to suck on ice or popsicles so that I don't get the chemo in my mouth. This could cause painful mouth sores. Again, no reaction. After each drug, they put saline in my port to wash out the previous meds. The final drug called tacitere, gave me a bad reaction. During this drug, I have to wear frozen booties and frozen mittens to keep from getting neuropathy or severe tingling and pain in the hands and feet. This was particularly uncomfortable. I ended up getting up after just a few minutes to use the restroom. When I came back, I had this huge pain in my stomach and a knotting up sensation in my abdomen. Right after that, my whole head felt like it was placed in the microwave..I felt like I suddenly had 110 degree fever..after that I couldn't breathe...I kept saying, "I can't breathe, I can't breathe!!" I remember my mother yelling, "Get a fucking doctor!" The nurses came in from everywhere and put ice on my face, gave me oxygen and took me off of that medicine fast!! My oxygenation never dropped below 97 percent, so that was good. After that, I was loaded up with more steroids, and benedryl.
Because of this reaction, my chemo regimen has been changed. I will continue to have the adriamycin and the cytoxin...Instead of the tacitere, I will have an alternative drug called taxol that will be administered differently. The chemo process will take longer, but I should have fewer side effects and the success rate should be the same. So, I will have 3 more treatments of the adriamycin and the tacitere administered every 3 weeks, and then I will just have the taxol once a week for twelve weeks. This will make my treatment last 6 more weeks than expected. When I came home yesterday, I slept for about an hour, ate dinner and took a short walk. I felt better after the walk and I slept great through the night.
This morning, I woke up feeling very bloated and flushed!!!! I gained 4 pounds in one day in what I hope is just water...I don't feel queasy, but I don't want to eat either...Next blog, I will talk about the surgery...
Have a wonderful weekend my friends!! Love and peace to you!!!
So, I went in for the treatments with Elliott, and my parents with me. I packed everything but the kitchen sink since the treatments were going to take a long time for the first one. (The nurses go slowly to check for allergic reactions.) The first IV they gave me was full of steroids, saline and anti-nausea medication. After that was over, I received the first chemo drug in a syringe, adraimycin. It is red in color and it makes the person pee red for a day or so afterward...No reaction from that one. After that, they flushed me with saline and I began the second drug called cytoxin . While having this drug, I have to suck on ice or popsicles so that I don't get the chemo in my mouth. This could cause painful mouth sores. Again, no reaction. After each drug, they put saline in my port to wash out the previous meds. The final drug called tacitere, gave me a bad reaction. During this drug, I have to wear frozen booties and frozen mittens to keep from getting neuropathy or severe tingling and pain in the hands and feet. This was particularly uncomfortable. I ended up getting up after just a few minutes to use the restroom. When I came back, I had this huge pain in my stomach and a knotting up sensation in my abdomen. Right after that, my whole head felt like it was placed in the microwave..I felt like I suddenly had 110 degree fever..after that I couldn't breathe...I kept saying, "I can't breathe, I can't breathe!!" I remember my mother yelling, "Get a fucking doctor!" The nurses came in from everywhere and put ice on my face, gave me oxygen and took me off of that medicine fast!! My oxygenation never dropped below 97 percent, so that was good. After that, I was loaded up with more steroids, and benedryl.
Because of this reaction, my chemo regimen has been changed. I will continue to have the adriamycin and the cytoxin...Instead of the tacitere, I will have an alternative drug called taxol that will be administered differently. The chemo process will take longer, but I should have fewer side effects and the success rate should be the same. So, I will have 3 more treatments of the adriamycin and the tacitere administered every 3 weeks, and then I will just have the taxol once a week for twelve weeks. This will make my treatment last 6 more weeks than expected. When I came home yesterday, I slept for about an hour, ate dinner and took a short walk. I felt better after the walk and I slept great through the night.
This morning, I woke up feeling very bloated and flushed!!!! I gained 4 pounds in one day in what I hope is just water...I don't feel queasy, but I don't want to eat either...Next blog, I will talk about the surgery...
Have a wonderful weekend my friends!! Love and peace to you!!!
Thursday, September 30, 2010
The day of chemo 1--9/30/10 at 2:22 a.m.
Since I am not sleeping, I decided to go ahead and write. I think it's the combination of the steroids and other supplements..All day yesterday and actually right now, I feel like I could go to the gym and pump some iron or do a kickboxing class..This is some pretty crazy stuff I'm taking!!
Back to before the surgery....My surgery was on August 5, 2010. It was going to be a 9 1/2 hour micro-surgery double mastectomy with DIEP flap. In the DIEP flap, surgeons actually use a microscope and laser to attach blood vessels to my new breasts and "flap" which is the new areola and nipple. The flap is actually skin taken from the abdomen and grafted on. Anyway, for about a month before the surgery, I was in full panic mode. I had never been put under for any kind of surgery much less an 9 1/2 hour one. The most extensive surgeries I had ever had before that were the two c-sections that I had for the births of my children, Ethan 10 and Zoe 6. Of course I was awake for those!! I had been exercising before the cancer diagnosis, but after I knew I was having the surgery, I began riding my bike every day..I felt as if I was getting ready for the marathon of my life. It turns out that exercise was the best thing I could have done for myself.
There are some interesting phenomena that occurred before my surgery and diagnosis. Recently, my husband Elliott began working for NEISD construction management. When the time came for him to decide on benefits, I remembered a presentation that went on at Bradley about cancer insurance. Usually, I turn my brain off during faculty meetings, but for this one, I was wide awake and paying attention. The presenter said that 1 in 3 people will get cancer in their lifetimes. I remember thinking, both Elliott and I have cancer in our families (no breast cancer on my side though), so this insurance might be a good thing. I still remember the day that Elliott had to figure out what insurance to get. He was already on my regular insurance plan...He asked me, should I get any extra insurance? It's time for open-enrollment. I told him to get the cancer insurance and to get the premium level to cover the family. He thought I was nuts, but I insisted on him getting it as well as the highest level of life insurance for both of us and our kids. I don't know why I was so adamant, but I was...Five months later I got my diagnosis. Between the regular insurance and the cancer insurance, we haven't had to pay a cent for anything.
A few months before that, we were looking for new couches for our living room. We looked and looked and decided on lazy-boy couches that are fully reclined...I'm so glad we did that b/c after my surgery, I had to sleep in a recliner for 2 months and Elliott could be there on the other couch sleeping comfortably too.
The night before my surgery, Elliott, my brother Jon, and my parents all went out to eat for what I called "The Last Supper" at a restaurant called Silo on 1604. It is a very upscale restaurant that I have only gone to one other time in my life. A friend of mine, Tim McWright, a wonderful saxophonist and minister had been leaving me cell phone messages that he had something to give me and that God was with me. I had planned on calling him back after dinner. As I was leaving the restaurant with my family, the elevator opened, and there was Tim. He had never been to that restaurant before and he was just going there to make reservations for him and his wife for their anniversary. (He had heard it was quite good.) There we were standing face to face..I was so glad to see him and told him that I was going to call him back. He told me that he thought my surgery had already happened and went looking for me at Methodist hospital to give me something. So, he went to Silo to make his reservations..In his hand he had a piece of paper. He said I was looking for you at Methodist and I wanted to give you this..It said:
Psalm 57:1
Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee:
Yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.
Now, I am not a religious person, but this really had me shaken. My mom who is also not religious in the least began to cry. I knew at that time that someone was watching over me and that I would survive the surgery.
More later....I hope everyone is getting a good night sleep! Love to all, Em
Back to before the surgery....My surgery was on August 5, 2010. It was going to be a 9 1/2 hour micro-surgery double mastectomy with DIEP flap. In the DIEP flap, surgeons actually use a microscope and laser to attach blood vessels to my new breasts and "flap" which is the new areola and nipple. The flap is actually skin taken from the abdomen and grafted on. Anyway, for about a month before the surgery, I was in full panic mode. I had never been put under for any kind of surgery much less an 9 1/2 hour one. The most extensive surgeries I had ever had before that were the two c-sections that I had for the births of my children, Ethan 10 and Zoe 6. Of course I was awake for those!! I had been exercising before the cancer diagnosis, but after I knew I was having the surgery, I began riding my bike every day..I felt as if I was getting ready for the marathon of my life. It turns out that exercise was the best thing I could have done for myself.
There are some interesting phenomena that occurred before my surgery and diagnosis. Recently, my husband Elliott began working for NEISD construction management. When the time came for him to decide on benefits, I remembered a presentation that went on at Bradley about cancer insurance. Usually, I turn my brain off during faculty meetings, but for this one, I was wide awake and paying attention. The presenter said that 1 in 3 people will get cancer in their lifetimes. I remember thinking, both Elliott and I have cancer in our families (no breast cancer on my side though), so this insurance might be a good thing. I still remember the day that Elliott had to figure out what insurance to get. He was already on my regular insurance plan...He asked me, should I get any extra insurance? It's time for open-enrollment. I told him to get the cancer insurance and to get the premium level to cover the family. He thought I was nuts, but I insisted on him getting it as well as the highest level of life insurance for both of us and our kids. I don't know why I was so adamant, but I was...Five months later I got my diagnosis. Between the regular insurance and the cancer insurance, we haven't had to pay a cent for anything.
A few months before that, we were looking for new couches for our living room. We looked and looked and decided on lazy-boy couches that are fully reclined...I'm so glad we did that b/c after my surgery, I had to sleep in a recliner for 2 months and Elliott could be there on the other couch sleeping comfortably too.
The night before my surgery, Elliott, my brother Jon, and my parents all went out to eat for what I called "The Last Supper" at a restaurant called Silo on 1604. It is a very upscale restaurant that I have only gone to one other time in my life. A friend of mine, Tim McWright, a wonderful saxophonist and minister had been leaving me cell phone messages that he had something to give me and that God was with me. I had planned on calling him back after dinner. As I was leaving the restaurant with my family, the elevator opened, and there was Tim. He had never been to that restaurant before and he was just going there to make reservations for him and his wife for their anniversary. (He had heard it was quite good.) There we were standing face to face..I was so glad to see him and told him that I was going to call him back. He told me that he thought my surgery had already happened and went looking for me at Methodist hospital to give me something. So, he went to Silo to make his reservations..In his hand he had a piece of paper. He said I was looking for you at Methodist and I wanted to give you this..It said:
Psalm 57:1
Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee:
Yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.
Now, I am not a religious person, but this really had me shaken. My mom who is also not religious in the least began to cry. I knew at that time that someone was watching over me and that I would survive the surgery.
More later....I hope everyone is getting a good night sleep! Love to all, Em
Wednesday, September 29, 2010
The day before 9/29/10--pumped up
I am so pumped up full of steroids and other supplements the day before this treatment it's astounding. I am extremely energetic and my personality is a little aggressive to say the least. On the inside, I'm scared about tomorrow, but the supplements and steroids are making me feel tough too.
Ok so backtracking a lot..Here is how the whole breast cancer diagnosis went down...Since I've been 40 years old (I'm 41, 42 in November) I have been feeling bad. Nothing I can really put my finger on..A few things were just getting tough to deal with. My level of fatigue was getting worse and worse, my headaches were horrible, and my menstrual cycle and associated breast pain became horrible. My mother and I would go on walks and I remember (and so does she) telling her "Mom, I just don't feel right. I can't figure it out." I had blood tests done to determine if I had a thyroid disorder, the docs did blood work and nothing ever came back.
One day in June after my period, I had horrible breast pain and a lump that would not subside. So, my doctor sent me to get a mammogram and they found two suspicious spots that were small but troublesome looking. Usually breast cancer doesn't present with pain, so I was encouraged with that. The biopsy came back positive for breast cancer. One was cancer inside a water cyst (the water was negative). This was the site that was hurting so badly. The other cancer was an incitu cancer on the completely other side of the breast...I didn't feel that one at all. Honestly, if I hadn't had pain, I would have delayed the mammogram..
From there, I went to see a surgeon who diagnosed the one I didn't feel as a stage 0 or incitu cancer and the other one near my armpit as a stage 1 invasive. From there I went to see a plastic surgeon ( a genius and a nice guy by the way) who told me about a procedure called the DIEP flap. Essentially, both breasts are removed by a general surgeon. The skin of the breast is kept, the nipples are removed and replaced with abdominal skin, and then fat from the abdomen is placed under the breast. (And I got a tummy tuck) Since my right breast couldn't be saved because of two sites in opposite sides, I had to have a mastectomy. The biopsy also showed that I had a type of cancer that was fairly aggressive and had a good chance of coming back. I opted for the double mastectomy and I totally don't regret it. Before the surgery, I had a final MRI that showed that I had a 3 tumor in that same breast, a stage 1. It was amazing to me that 3rd lesion wasn't conclusive on a regular mammogram.
Ok there is more to this story..I'm just getting started back-tracking here..
As of today, I'm back at work, and in a lot of ways I feel better than I have felt in years.. I have been riding my bike or walking on the treadmill every day..Ok, today I didn't because I went out for dinner and dessert since I have chemo starting tomorrow. But for the most part....
Have a great night friends...Enjoy every moment that you have on this wonderous and crazy planet!
Ok so backtracking a lot..Here is how the whole breast cancer diagnosis went down...Since I've been 40 years old (I'm 41, 42 in November) I have been feeling bad. Nothing I can really put my finger on..A few things were just getting tough to deal with. My level of fatigue was getting worse and worse, my headaches were horrible, and my menstrual cycle and associated breast pain became horrible. My mother and I would go on walks and I remember (and so does she) telling her "Mom, I just don't feel right. I can't figure it out." I had blood tests done to determine if I had a thyroid disorder, the docs did blood work and nothing ever came back.
One day in June after my period, I had horrible breast pain and a lump that would not subside. So, my doctor sent me to get a mammogram and they found two suspicious spots that were small but troublesome looking. Usually breast cancer doesn't present with pain, so I was encouraged with that. The biopsy came back positive for breast cancer. One was cancer inside a water cyst (the water was negative). This was the site that was hurting so badly. The other cancer was an incitu cancer on the completely other side of the breast...I didn't feel that one at all. Honestly, if I hadn't had pain, I would have delayed the mammogram..
From there, I went to see a surgeon who diagnosed the one I didn't feel as a stage 0 or incitu cancer and the other one near my armpit as a stage 1 invasive. From there I went to see a plastic surgeon ( a genius and a nice guy by the way) who told me about a procedure called the DIEP flap. Essentially, both breasts are removed by a general surgeon. The skin of the breast is kept, the nipples are removed and replaced with abdominal skin, and then fat from the abdomen is placed under the breast. (And I got a tummy tuck) Since my right breast couldn't be saved because of two sites in opposite sides, I had to have a mastectomy. The biopsy also showed that I had a type of cancer that was fairly aggressive and had a good chance of coming back. I opted for the double mastectomy and I totally don't regret it. Before the surgery, I had a final MRI that showed that I had a 3 tumor in that same breast, a stage 1. It was amazing to me that 3rd lesion wasn't conclusive on a regular mammogram.
Ok there is more to this story..I'm just getting started back-tracking here..
As of today, I'm back at work, and in a lot of ways I feel better than I have felt in years.. I have been riding my bike or walking on the treadmill every day..Ok, today I didn't because I went out for dinner and dessert since I have chemo starting tomorrow. But for the most part....
Have a great night friends...Enjoy every moment that you have on this wonderous and crazy planet!
Tuesday, September 28, 2010
Tuesday, September 28th, 2010
I have never done a blog before, but I think that I need to start documenting what I'm going through with my breast cancer diagnosis. Tomorrow is called "Day 0" also known as the day before I start chemo. I will have a whole host of drugs to take before I even start chemo and every day until I'm done. My first chemo starts on Thursday, September 30th, 2010, and my final chemo will be on January 13th, 2011.
Tomorrow, I'm going to try to recount everything that has gone on so far since my diagnosis on 7/8/10.
Goodnight all,
Em
Tomorrow, I'm going to try to recount everything that has gone on so far since my diagnosis on 7/8/10.
Goodnight all,
Em
Subscribe to:
Posts (Atom)