Brian Bender here is a old rant of mine I forgot to post :)
In 1997 the Great Mall of the Great Plains opened. This mall was supposed to be the biggest outlet mall in the state of Kansas. It featured both outlet and traditional mall stores laid out in a half of a mile circle. This mall did not succeed to say the least. It is sad, half of the store spaces are empty. However, this indoor circular mall has become a winter wonderland for toddlers and mall walkers.
The winter has come and has trapped Autumn and I inside our home. 14 degrees sucks. I have tried shopping like mentioned earlier, but my child needs to run. She needs to play. Her behavior out shopping is a direct result of needed stimulation. Autumn and I are the same, we don't like being cooped up all day and get bored easy. I bake out of boredom and I need to relax on this because I am starting to gain my winter coat of fat.
Therefore I decided to take her to The Great Mall of the Great Plains. I have been told before that this a great place to let your toddler run off some energy in the winter. That was some good advice. And the people that own this mall know it. There are little quarter rides placed everywhere, games, and play areas for little children. We went to a play area that only one other little girl was playing in at first but by the time I left there were 8 children there.
So now that Autumn is older I find her starting to interact with kids that are a bit more vocal than I am used to. Autumn was playing on this bridge and a little boy was trying to climb on the outside of the bridge. Autumn went to put his hands down and I immediately stopped her and said "we share the playground and we don't put our hands on others". She stopped and looked at me pouting her lips and then the boy reached over and pushed her saying "yeah don't touch others". My immediate reaction was to snap at him and I did "that goes for you too!". Well we go on to a slide that Autumn needed help climbing up. The little boy follows us and of course he needs help climbing up too and is asking me. So where is this kids mother? Oh just playing on her cell phone.
We all do things that other parents don't agree with. Mine is I let my kid eat in the car. I am sure people would tell me my kid is going to choke and that food can always wait. But I can not stand the parent on the phone. Especially when their child is following me around asking me for help. I don't like telling others kids not to push and I definitely would never pick up a strangers kid unless they were in danger or something. Needless to say after awhile we ended up just moving on to the next play area.
Autumn had a blast running around and I was so happy I got to get us out of the house for a bit!
Friday, November 21, 2014
Monday, March 3, 2014
Radiation Week: My Story
I for some reason have a bit of a writers block when it comes to describing last week. Mainly because I slept anywhere from 12-16 hours a day and experienced some pretty wicked nausea. I have brought you all on this journey with me and now I can tell you how it went.
On Monday, my first day of treatment, I actually went to work in the morning. It was kind of ironic. Here I am teaching a student and helping patients, when later in the day I would be on the flip side in the patient's position. It was a emotional experience, to take care of people when all you want to do is cry in the corner for yourself, but you have to be strong because at the end of the day these people need you to be. The student I had was impressed by composure. When you are sick, it is mentally exhausting, at the end of the day all you want to for life to be "normal", treated the same way, and there is no point of crying in that corner because this is your life and you have to think positive and protect it. Being negative just ruins a day that you could possibly enjoy and who knows what can happen to any of us at any time. Life is precious and it is a gift. My husband walked over with me that first day. My anxiety was so high. I was just staring at the clock. It was "the final countdown". The receptionist told me they were ready for me and I met my nurses. They explained everything to me. The room is full of screens and of course the gamma knife. Which I appropriately named "The Dixie Chicks", since my tumor is named Earl. They place you on the table, in the mask, do a CT scan, then you wait for Dr. Wang, my radiation oncologist, to check calibration because they get it down to a 1mm accuracy. They move you throughout the room on the table to those white markings on the floor, and there are three which makes my name even more appropriate.
The first day, my nurses warned me would be the longest. About 45 minutes in the mask. Once it got started, radiation does not hurt while you are getting your treatment. It is the after effects that make radiation difficult. That and the laying in the mask. Won't lie when you are actually getting the radiation beam it sounds like a laser ink printer.
I woke up the next morning with a right sided headache and nausea after sleeping 12 hours straight. I felt like I have after a super rough night of drinking, where you are hugging the toilet and regretting your actions from the night before because you are throwing up water and bile. It was horrible. I had Autumn with me this day and our little ones can tell when you are sick. Autumn took me by the hand "Come here, mommy", placed me in her toddler bed, covered me with sheets and Norman (her sock monkey), and said "you no good, you sleepy". I lifted my head to look at her and she just placed my head back on the pillow. Just looking into those deep brown eyes make everything I have to endure worth it. She is my miracle.
I went into my second treatment. Got a prescription for zofran ( anti nausea med) and it only took 20 minutes. My mother drove me on Monday, Tuesday, and Wednesday. After the second treatment, we had to go pick up Autumn from my friend Lindsay's house, and I fell asleep the whole way from KU med to Gardner. I woke up in Gardner and my mom was freaking out because she missed a turn. I went inside to get Autumn, spoke to Lindsay, but completely forgot about this later. Like I said the week of radiation was truly a blur of sleeping and vomit for me. I slept about 16 hours that night.
Day 3, I felt like a person again. Much better, just tired. I took Autumn to my friend Haley's and made my journey to radiation again. Once again slept on the way home from radiation and Haley could tell I was a little out of it. I got home slept on the couch. Then slept 12 hours that night.
Day 4, the nausea returned. My sister in law Jessi took me to radiation. We got lunch at Panera. Autumn was at daycare. I remember this being the most I ate all week. It was so good! After treatment though, my decision to eat was a bad joke and I slept another 12 hours.
Day 5, my mother in law took me to radiation and she kept Autumn afterwards. Fred was to get off work early and take me home. I got to ring the bell and keep my mask. YAY! Fred and I went to Houlihan's to celebrate. We shared a app and I got a glass of wine. This would later be yet again another bad idea. I would hug the toilet and sleep 16 hours.
Fast forward to now and I feel so much better. I am still tired and now am suffering some of the side effects from taking so much Zofran but I won't get into details about that. The fear of my face drooping is still there. And that is mainly in my head. They say if my nerve was to swell from radiation, I should have experienced this by now. I am so happy it is over. According to the literature this week and next are supposed to be worse for fatigue then last. So far, um....no, last week week was horrible. But I am so happy this part is over. I have a follow up with Radiation Oncology in a month to see how I am doing. Then my next scan will be in July with Neurosurg. I have a feeling I will be a nervous wreck that week! But that can wait. Live in the moment. Cherish the day! I know my tumor will be a life long journey. There will always be scans. There will always be appointments. There will always be a chance of it growing again. Which radiation has a 90% success rate but technology and radiation is changing yearly so there is not much research about the long term success of stopping tumor growth but up to 5 years. I feel good and have a beautiful family, there is no reason to feel pity for myself. I accomplished something last week for that I am proud of myself.
On Monday, my first day of treatment, I actually went to work in the morning. It was kind of ironic. Here I am teaching a student and helping patients, when later in the day I would be on the flip side in the patient's position. It was a emotional experience, to take care of people when all you want to do is cry in the corner for yourself, but you have to be strong because at the end of the day these people need you to be. The student I had was impressed by composure. When you are sick, it is mentally exhausting, at the end of the day all you want to for life to be "normal", treated the same way, and there is no point of crying in that corner because this is your life and you have to think positive and protect it. Being negative just ruins a day that you could possibly enjoy and who knows what can happen to any of us at any time. Life is precious and it is a gift. My husband walked over with me that first day. My anxiety was so high. I was just staring at the clock. It was "the final countdown". The receptionist told me they were ready for me and I met my nurses. They explained everything to me. The room is full of screens and of course the gamma knife. Which I appropriately named "The Dixie Chicks", since my tumor is named Earl. They place you on the table, in the mask, do a CT scan, then you wait for Dr. Wang, my radiation oncologist, to check calibration because they get it down to a 1mm accuracy. They move you throughout the room on the table to those white markings on the floor, and there are three which makes my name even more appropriate.
The first day, my nurses warned me would be the longest. About 45 minutes in the mask. Once it got started, radiation does not hurt while you are getting your treatment. It is the after effects that make radiation difficult. That and the laying in the mask. Won't lie when you are actually getting the radiation beam it sounds like a laser ink printer.
 |
| The mask has a front and a back side. They bolt you to the table in it. The holes on the side is where they literally hammer it into the table. |
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| There is a bite block in there that you are biting on the whole time. If you look at my photos I took daily after treatments you can see the red marking on my face from how tight the mask has to fit. |
I woke up the next morning with a right sided headache and nausea after sleeping 12 hours straight. I felt like I have after a super rough night of drinking, where you are hugging the toilet and regretting your actions from the night before because you are throwing up water and bile. It was horrible. I had Autumn with me this day and our little ones can tell when you are sick. Autumn took me by the hand "Come here, mommy", placed me in her toddler bed, covered me with sheets and Norman (her sock monkey), and said "you no good, you sleepy". I lifted my head to look at her and she just placed my head back on the pillow. Just looking into those deep brown eyes make everything I have to endure worth it. She is my miracle.
I went into my second treatment. Got a prescription for zofran ( anti nausea med) and it only took 20 minutes. My mother drove me on Monday, Tuesday, and Wednesday. After the second treatment, we had to go pick up Autumn from my friend Lindsay's house, and I fell asleep the whole way from KU med to Gardner. I woke up in Gardner and my mom was freaking out because she missed a turn. I went inside to get Autumn, spoke to Lindsay, but completely forgot about this later. Like I said the week of radiation was truly a blur of sleeping and vomit for me. I slept about 16 hours that night.
Day 3, I felt like a person again. Much better, just tired. I took Autumn to my friend Haley's and made my journey to radiation again. Once again slept on the way home from radiation and Haley could tell I was a little out of it. I got home slept on the couch. Then slept 12 hours that night.
 |
| Had my ladies on the couch with me. You can't tell too well but that is Dani under my right arm. |
Day 4, the nausea returned. My sister in law Jessi took me to radiation. We got lunch at Panera. Autumn was at daycare. I remember this being the most I ate all week. It was so good! After treatment though, my decision to eat was a bad joke and I slept another 12 hours.
Day 5, my mother in law took me to radiation and she kept Autumn afterwards. Fred was to get off work early and take me home. I got to ring the bell and keep my mask. YAY! Fred and I went to Houlihan's to celebrate. We shared a app and I got a glass of wine. This would later be yet again another bad idea. I would hug the toilet and sleep 16 hours.
Fast forward to now and I feel so much better. I am still tired and now am suffering some of the side effects from taking so much Zofran but I won't get into details about that. The fear of my face drooping is still there. And that is mainly in my head. They say if my nerve was to swell from radiation, I should have experienced this by now. I am so happy it is over. According to the literature this week and next are supposed to be worse for fatigue then last. So far, um....no, last week week was horrible. But I am so happy this part is over. I have a follow up with Radiation Oncology in a month to see how I am doing. Then my next scan will be in July with Neurosurg. I have a feeling I will be a nervous wreck that week! But that can wait. Live in the moment. Cherish the day! I know my tumor will be a life long journey. There will always be scans. There will always be appointments. There will always be a chance of it growing again. Which radiation has a 90% success rate but technology and radiation is changing yearly so there is not much research about the long term success of stopping tumor growth but up to 5 years. I feel good and have a beautiful family, there is no reason to feel pity for myself. I accomplished something last week for that I am proud of myself.
Friday, February 21, 2014
Final Countdown! 2 days
The five stages of grief are the emotional stages that one experiences when faced with death or extremely awful fate. The stages are denial, anger, bargaining, depression and acceptance. I always think of this episode of Robot Chicken I saw, where this giraffe is stuck in a tar pit. I somewhat relate to this giraffe. I am now in the stage of acceptance. I am happy to say.
I was reading my information from my doctor's office, a pamphlet "Understanding Radiation Therapy- A Guide for Patients and Families". The first sentence in this book is "You've been told you have cancer." Okay.....wait a minute.....I don't have cancer. But the reality of the situation is most people that undergo Radiation Therapy have cancer. The typical treatment plan for radiation is 3-6 weeks, 5 days a week. Mine is only 1 week, for 5 days in a row. All the information I am given about radiation all say things like "to prevent or stop cancer to spread", "lessen the chance the cancer may come back" At the end of day. Things could always be worse. Most of the people I am sitting with in the waiting room are facing cancer that if they don't stop, it is a life or death situation. My tumor is not going to kill me. It may damage my face, which is a HUGE deal, but it will not take my life.
Today I baked cupcakes. I love baking. If you follow the directions, you will always come up with something fantastic that puts a smile on people's faces. I take my analogy of baking and use it towards my health. If I follow the directions to the best of my ability, the outcome will be amazing and will put a smile on my face and the people I choose to surround myself with.
Sure I am scared. Don't get me wrong. But I am looking forward to ringing the bell after I complete that last treatment next friday. I am looking forward to the future. Sure I might now have to see a Radiation Oncologist along with my Neurosurgeon for the rest of my life, but what other options do I have. I have received some letters and cards this last week. I thank everyone for their kind words and support through all of this. Your words and actions of sending out cards, keep me strong, keep me positive, and help remind me that it is all going to be okay. It is the simple things that can change a day, so thank you!
I start treatment Monday. My paperwork for work is in. Child care for treatment times set up and rides to treatments arranged. Now I just have to do it! Wish me luck! 2 more days till treatment time.
I was reading my information from my doctor's office, a pamphlet "Understanding Radiation Therapy- A Guide for Patients and Families". The first sentence in this book is "You've been told you have cancer." Okay.....wait a minute.....I don't have cancer. But the reality of the situation is most people that undergo Radiation Therapy have cancer. The typical treatment plan for radiation is 3-6 weeks, 5 days a week. Mine is only 1 week, for 5 days in a row. All the information I am given about radiation all say things like "to prevent or stop cancer to spread", "lessen the chance the cancer may come back" At the end of day. Things could always be worse. Most of the people I am sitting with in the waiting room are facing cancer that if they don't stop, it is a life or death situation. My tumor is not going to kill me. It may damage my face, which is a HUGE deal, but it will not take my life.
Today I baked cupcakes. I love baking. If you follow the directions, you will always come up with something fantastic that puts a smile on people's faces. I take my analogy of baking and use it towards my health. If I follow the directions to the best of my ability, the outcome will be amazing and will put a smile on my face and the people I choose to surround myself with.
Sure I am scared. Don't get me wrong. But I am looking forward to ringing the bell after I complete that last treatment next friday. I am looking forward to the future. Sure I might now have to see a Radiation Oncologist along with my Neurosurgeon for the rest of my life, but what other options do I have. I have received some letters and cards this last week. I thank everyone for their kind words and support through all of this. Your words and actions of sending out cards, keep me strong, keep me positive, and help remind me that it is all going to be okay. It is the simple things that can change a day, so thank you!
I start treatment Monday. My paperwork for work is in. Child care for treatment times set up and rides to treatments arranged. Now I just have to do it! Wish me luck! 2 more days till treatment time.
Friday, February 14, 2014
2 More Weekends. 1 and Half More Weeks
The anticipation. The constant feeling, touching and looking at my face. "Is it drooping?" "Is it tingling?" "Do both sides feel the same?" "Please God don't grow and push against something in this short little time I wait to begin radiation." The jokes. The feelings of this is all going to be okay. The countdown. The anticipation.
These are just a few of the thoughts that conquer my thought process everyday. The wait to begin a procedure or have a surgery is just taxing on someone. You just want to get it over with. Feel normal again. My husband has played this game before with me. And you can tell. The minute I begin touching my face. He stops everything looks at me and says "Honey it is going to be okay. We are almost there." Today on Valentine's Day I am so happy to have him and celebrate with him. It makes me forget the sickness, the fear and the anticipation.
I got a letter the other day that was just kind of like a slap in the face. You have been denied life insurance due to.....acoustic neuroma. No matter how much better I feel or how long the beast lays dormant in life, I will never qualify for a life insurance policy that requires a medical background check. This broke my spirit just reading it. I am 29. If something happens to me, my husband and daughter will not be left with much. And no matter how healthy or what ever good news I receive in the future, I will always be too sick and risky for life insurance. Talk about something I never would have dreamed about having to face before I am thirty.
I have 2 more weekends. One and a half more weeks till treatment time.
Hold your loved ones close today. You never know how fast something can change and alter your path in life. You forget how much the little things matter.
These are just a few of the thoughts that conquer my thought process everyday. The wait to begin a procedure or have a surgery is just taxing on someone. You just want to get it over with. Feel normal again. My husband has played this game before with me. And you can tell. The minute I begin touching my face. He stops everything looks at me and says "Honey it is going to be okay. We are almost there." Today on Valentine's Day I am so happy to have him and celebrate with him. It makes me forget the sickness, the fear and the anticipation.
I got a letter the other day that was just kind of like a slap in the face. You have been denied life insurance due to.....acoustic neuroma. No matter how much better I feel or how long the beast lays dormant in life, I will never qualify for a life insurance policy that requires a medical background check. This broke my spirit just reading it. I am 29. If something happens to me, my husband and daughter will not be left with much. And no matter how healthy or what ever good news I receive in the future, I will always be too sick and risky for life insurance. Talk about something I never would have dreamed about having to face before I am thirty.
I have 2 more weekends. One and a half more weeks till treatment time.
Hold your loved ones close today. You never know how fast something can change and alter your path in life. You forget how much the little things matter.
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| My amazing mask for radiation |
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| It was hot plastic that they lay on your face and you have to stay still for 25 minutes while it sets. I wish this process upon no one. |
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| Autumn's Valentine's Day gifts to her Grandmas |
Tuesday, January 28, 2014
Feelin' Lucky
Luck varies. This is the first thing that is mentioned when google search "luck". Even its definition can change based on philosophy, religion, ethnicity, ect.. I personally agree with the definition of luck as being "events that influence one's life and are seemingly beyond one's control". My luck these last couple of weeks have been below desirable. Who ever came up with that whole things happen in sets of three, I wouldn't mind punching. The thing is though, I do believe that all things happen to us for a reason. I do not sit there and dwell on the bad things that happen to me because shit things can always be worse. And I do truly believe that. I could have died during surgery. I could have found out about this tumor early in my pregnancy and had to have to make a decision that would require me to question myself everyday. When my car died on the highway, it was the weekend, I was able to make it over to the shoulder without getting in a bad car accident. With my phone, shit at least the one and half days I went without one my car decided to still run good.
Tomorrow is my big radiation oncology appointment. First off, you get good parking. I know that would not be a positive thing most people think about but.....heck yes I will take that. The thing is though, patients get really good parking for radiation oncology because they are really sick. I have no symptoms from this tumor growing. I feel perfectly fine. It is such a emotional roller coaster to be going into a appointment because in all reality, I guess I am sick. I have a tumor growing in my head. I fear these treatments because they will probably make me feel sick and I have very high anxiety of my previous symptoms before surgery returning. I hated the tingling all over my face, the inability to chew food on my right side of my mouth, the eye drops/gels, drinking water and having it come out the right side of my mouth, and plan old just looking in the mirror and not recognizing my own face.
I know I am lucky. I have a good support system. I tackled a huge ass tumor and came out smiling. I have a excellent medical team. Everyday I take care of patients, I am able to give hope. No one talks about the positive outcomes or has internet sites dedicated to successful stories. I am a positive story. This radiation my be a set back but it was always in my original neurosurgeon's plan. I knew this possibility existed since waking up in the ICU. At the end of the day luck is in the eye of the beholder. Luck defines the events that influence ones life but it is my life and I will take from it what I want. And at the end of the day I still feel lucky.
Thursday, January 16, 2014
A letter to my daughter
Dear Autumn,
As I was lying in "the tube" getting my MRI done. I could feel the beating of my heart thumping against the table and the anxiety building up inside of me, and all I could see in my head was you smiling back at me in front of the doorway this morning. Just imagining your face calmed me. As I proceeded to lay in the tube for the remainder of the 40 minute scan, the different rhythms the machine produced made me think of different situations with you. There was one where you were forcefully rocking on your rocking horse. Another where you were sticking those Mickey Mouse stickers you got all over my furniture and me gracefully removing them. Then there was the day you were born. Your father and I gazing down at you. The first time you tried to eat bananas. All these memories invade me and keep me calm.
Mom did not get good news today. My results from that scan showed that the mass inside my head is growing. The big fear I have is losing my ability to smile. I love making faces and having you mimic them. I love smiling at you. I know it probably sounds old to you, but I am only 29. Someday you will see this as being young too. At times I get scared. I want you to know that when you stick stickers all over my face later if I am not acting 100% like my normal self, Mom is okay, she just needs to soak it all in. Tomorrow we will take the maraca's and the bubble guppy microphone and have a dance party. I hate that this tumor won't leave me alone and I hate that it takes away from time that I get to enjoy with you. I am sorry if I am sad or distracted at times. We will get through this hump as a family like we all did last time. That I can promise you.
These next few weeks will be difficult as we learn about the radiation for the stereotactic surgery. Just as you keep me calm during my scan, just know I will be thinking of you every minute. You keep me strong. I love you so much and together this too will pass.
Love, Your Mommy :)
As I was lying in "the tube" getting my MRI done. I could feel the beating of my heart thumping against the table and the anxiety building up inside of me, and all I could see in my head was you smiling back at me in front of the doorway this morning. Just imagining your face calmed me. As I proceeded to lay in the tube for the remainder of the 40 minute scan, the different rhythms the machine produced made me think of different situations with you. There was one where you were forcefully rocking on your rocking horse. Another where you were sticking those Mickey Mouse stickers you got all over my furniture and me gracefully removing them. Then there was the day you were born. Your father and I gazing down at you. The first time you tried to eat bananas. All these memories invade me and keep me calm.
Mom did not get good news today. My results from that scan showed that the mass inside my head is growing. The big fear I have is losing my ability to smile. I love making faces and having you mimic them. I love smiling at you. I know it probably sounds old to you, but I am only 29. Someday you will see this as being young too. At times I get scared. I want you to know that when you stick stickers all over my face later if I am not acting 100% like my normal self, Mom is okay, she just needs to soak it all in. Tomorrow we will take the maraca's and the bubble guppy microphone and have a dance party. I hate that this tumor won't leave me alone and I hate that it takes away from time that I get to enjoy with you. I am sorry if I am sad or distracted at times. We will get through this hump as a family like we all did last time. That I can promise you.
These next few weeks will be difficult as we learn about the radiation for the stereotactic surgery. Just as you keep me calm during my scan, just know I will be thinking of you every minute. You keep me strong. I love you so much and together this too will pass.
Love, Your Mommy :)
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