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
Saturday, November 27, 2010
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??
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