Freinds and family,
It has been a really long time since I posted last. The reasons are numerous. But mostly I have been really busy healing. I have been healing with my health. Radiation was really hard on me and it really kept me from being my normal self. But I am happy to report that at this time all is looking good. I can not say that I am cancer free because it is not possible to tell whether I am or not. Since they were not able to remove two of the tumors back in Feburary and because they were so large they still have some activity on the PET scan. What the doctors are not able to tell is whether the activity is cancerous or just physiologic. They believe that I am currently cancer free but I will have amuch better idea if I am or not when I have another CT in November. They have taken VERY detailed pictures of the tumors and they will look at them again to see if they have grown or not. If they do not grow or if they shrink that is great news that I am still fighting and winning this battle. But today I feel good and am very happy to be alive.
I have spent most of my time healing the relationships with my children and wife. They have endured so much as they were with me the whole time I have been battleing this disease. I have built some wonderful memories with my family over the last few weeks. My priorities have changed a lot. I now cherish every moment I get to spend with my kids and wife. I really have been working on supporting Em. She has been through so much. She has been so strong. It has taken so much for her to emotionally be there for me. She has had so much stress with maintianing her job, raising our kids as a single mother for the most part, and dealing with her own sadness and loss.
Well I need to go and live my life. chat later
Tuesday, September 15, 2009
Sunday, June 14, 2009
Hello ... anybody still out there?!?
Sorry for such a long time since my last post. With the end of the school year, the passing of my grandmother, and all of the issues with my health I just haven't been able to sit down and write.
I guess the first item I need to update is my current treatment.
A couple weeks ago I began my radiation therapy. So now every weekday I am driving from Pendleton to Kenniwick WA. For those of you not fully geographical inclined , Kenniwick is about 65 miles north of Pendleton. The first few days the trip was actually a nice drive. Now it is a pretty tough chore. There is not much too look at and the radiation therapy is starting to get the better of me.
Radiation therapy is ... ... ... well ... ... I don't mean to sound alarmist ... but ... way scarier than chemo. I go into a room with a door one foot thick. Lay on a table surrounded by the plaster molds of other cancer patients.
The molds???
Well let me try to explain. To keep the patient in the same position everyday they make a mold of the persons' body where they are receiving treatment. I have a mold of my torso since my tumors are in my chest, but people with head and neck cancer have molds made of their necks and heads. So along the walls of the radiation room are all of these busts of the different cancer patients. The busts are not just some simple mold. They really show most of the facial features of the patients. None of them look happy. They all just sit on these shelves staring out into space. It's really creepy.
Another item that I do not like is that I feel like a rotisserie chicken. As I lay on the table I am radiated with large doses of x-rays. Yep, the same kind of radiation that we all get a little of everyday from the sun. But my dose is similar to standing out in the sun for twelve hours. How long does it take you ask. The entire radiation takes less than a minute. I receive 26 second of radiation directed through the front of my chest and 22 seconds of radiation through my back. I know because I have counted. The freaky part is if you were to put your hand on my chest after treatment, like Emma Lee has, your hand would be warm. Basically they are baking me with a lot more than a little light bulb like in an easy bake oven.
Also unlike chemo that goes in cycles, radiation therapy just gets harder to deal with everyday. There is no getting a little better before you get another treatment. With radiation every day gets harder and harder than the last until you are finished. So I worry quite a bit because I am already having problems with side effects and I am only one third of the way done. The fatigue with radiation is at least twice as bad as it was with chemo and because my therapy is directed at my chest my esophagus is getting pretty torn up, my lungs burn, and my skin is getting fried.
If you can also imagine I have been doing much of the driving so far. I have driven as much as I can because I know that very soon I will not be able to do it. It is such a long way and I am so tired and I do not want to get in a car accident because I drifted off at the wheel. It is also no short trip. Getting from here to there is over 130 miles a day. It is very exhausting and expensive. Em has been there to help keep me on the road and to get all of my appointment in line. I am hoping that I might be able to get some people to drive me over and back. I am getting pretty tired and want to be safe on the road.
On another note I had an accident at my house. I fell off a retaining wall and got a few good scratches, bruises, and one really good gash behind my knee. I am on antibiotics because it was not wanting to heal up and the doctor was worrying a bit about a serious infection. So visualize this ... me hunched over from fatigue, walking with a limp, and with a shinny head (cuz my hair is just now growing back). If a picture of Quasimodo is what you imagined your not far off, all I need is a bell tower.
I want to give an update on Emma Lee as well. This has been really hard on her. Now since January she has been the main one to keep everything together. She is moving into a new role with the Department of Agriculture. She is going to be moving into farm records. This is a job she is going to do great at but is a tremendous amount to learn and has a lot of responsibility. She isn't sleeping too well. I guess that one should expect that lack of sleep would be a natural consequence of all of our stress but it certainly makes things tougher. What she really needs is a break. I see ads on the TV for "Merry Maids" but there isn't anything like that in Pendleton.
It was very nice that Em's parents took the kids for the weekend to let Em catch up on house hold chores a bit. But what she really need was some rest. This family needs to find a way to get a vacation. Another thing that is coming up is that on August 14th Emma Lee and I will have been married for ten years. We have been dating for almost seventeen years but this is a major milestone anniversary. I really want it to be great. I hope we can find a way to celebrate it in style.
I hope that if you get a free minute that you drop me a message. Email, phone, carrier pigeon, or even snail mail would be great. This family is pretty down and could really use some messages from our friends.
Thanks for everything again and I hope to see you soon.
PS Youth and Government Crew. You should really have a reunion!!!
I guess the first item I need to update is my current treatment.
A couple weeks ago I began my radiation therapy. So now every weekday I am driving from Pendleton to Kenniwick WA. For those of you not fully geographical inclined , Kenniwick is about 65 miles north of Pendleton. The first few days the trip was actually a nice drive. Now it is a pretty tough chore. There is not much too look at and the radiation therapy is starting to get the better of me.
Radiation therapy is ... ... ... well ... ... I don't mean to sound alarmist ... but ... way scarier than chemo. I go into a room with a door one foot thick. Lay on a table surrounded by the plaster molds of other cancer patients.
The molds???
Well let me try to explain. To keep the patient in the same position everyday they make a mold of the persons' body where they are receiving treatment. I have a mold of my torso since my tumors are in my chest, but people with head and neck cancer have molds made of their necks and heads. So along the walls of the radiation room are all of these busts of the different cancer patients. The busts are not just some simple mold. They really show most of the facial features of the patients. None of them look happy. They all just sit on these shelves staring out into space. It's really creepy.
Another item that I do not like is that I feel like a rotisserie chicken. As I lay on the table I am radiated with large doses of x-rays. Yep, the same kind of radiation that we all get a little of everyday from the sun. But my dose is similar to standing out in the sun for twelve hours. How long does it take you ask. The entire radiation takes less than a minute. I receive 26 second of radiation directed through the front of my chest and 22 seconds of radiation through my back. I know because I have counted. The freaky part is if you were to put your hand on my chest after treatment, like Emma Lee has, your hand would be warm. Basically they are baking me with a lot more than a little light bulb like in an easy bake oven.
Also unlike chemo that goes in cycles, radiation therapy just gets harder to deal with everyday. There is no getting a little better before you get another treatment. With radiation every day gets harder and harder than the last until you are finished. So I worry quite a bit because I am already having problems with side effects and I am only one third of the way done. The fatigue with radiation is at least twice as bad as it was with chemo and because my therapy is directed at my chest my esophagus is getting pretty torn up, my lungs burn, and my skin is getting fried.
If you can also imagine I have been doing much of the driving so far. I have driven as much as I can because I know that very soon I will not be able to do it. It is such a long way and I am so tired and I do not want to get in a car accident because I drifted off at the wheel. It is also no short trip. Getting from here to there is over 130 miles a day. It is very exhausting and expensive. Em has been there to help keep me on the road and to get all of my appointment in line. I am hoping that I might be able to get some people to drive me over and back. I am getting pretty tired and want to be safe on the road.
On another note I had an accident at my house. I fell off a retaining wall and got a few good scratches, bruises, and one really good gash behind my knee. I am on antibiotics because it was not wanting to heal up and the doctor was worrying a bit about a serious infection. So visualize this ... me hunched over from fatigue, walking with a limp, and with a shinny head (cuz my hair is just now growing back). If a picture of Quasimodo is what you imagined your not far off, all I need is a bell tower.
I want to give an update on Emma Lee as well. This has been really hard on her. Now since January she has been the main one to keep everything together. She is moving into a new role with the Department of Agriculture. She is going to be moving into farm records. This is a job she is going to do great at but is a tremendous amount to learn and has a lot of responsibility. She isn't sleeping too well. I guess that one should expect that lack of sleep would be a natural consequence of all of our stress but it certainly makes things tougher. What she really needs is a break. I see ads on the TV for "Merry Maids" but there isn't anything like that in Pendleton.
It was very nice that Em's parents took the kids for the weekend to let Em catch up on house hold chores a bit. But what she really need was some rest. This family needs to find a way to get a vacation. Another thing that is coming up is that on August 14th Emma Lee and I will have been married for ten years. We have been dating for almost seventeen years but this is a major milestone anniversary. I really want it to be great. I hope we can find a way to celebrate it in style.
I hope that if you get a free minute that you drop me a message. Email, phone, carrier pigeon, or even snail mail would be great. This family is pretty down and could really use some messages from our friends.
Thanks for everything again and I hope to see you soon.
PS Youth and Government Crew. You should really have a reunion!!!
Friday, May 22, 2009
compartmentalize
This past week has been of tremendous emotional strain.
This past Monday, my grandmother past away. To begin to explain the roll that she played in my life you have to go back to my birth. "Grandma Clark" was always there. At every birthday, every holiday, school functions ranging from "Arts and Tarts" to band and music concert. My grandma was at little league games and boy scout courts of honor. She would come over in the afternoons to help my parents out by watching us kids after school. My grandma valued music and life experiences. She bought my tenor saxophone so I could follow my dream of music and sent me to the Boy Scouts National Jamboree back on the east coast when I was 13 years old to broaden my horizons. I would spend hours at her house in the summers building little houses and forts out of the scrap lumber that my father stored in her old carport. She would pick me up after school in Junior High so often that I only road the school bus twice in my junior high school years. Once on the way to school on my first day in seventh grade and one on the way home on the last day of ninth grade. Most days my dad would take me to school because I had Jazz band at 0 period but my grandma was there almost every day for the ride home.
Grandma Clark was so giving. It wasn't until I was in high school that I began to realize the amazing truth that was my grandma. My grandma worked so hard to give me and my brothers and sisters a life that most people only dream of. We did not only have our parents who loved and supported us in all we did but we had our grandparents. My grandmother was constantly giving to us kids. We were showered not only but her love and support for the activities we chose to do but she made sure that we had the support to participate in every opportunity that came our way.
My grandmother had been ill for quite sometime and it was really hard to see such a strong and proud woman who had given so much struggle so hard near the end. Her passing has left a very large hole in my life. These last few months have been exceptionally hard because I was not able to visit her as often as I wanted to. I had to be careful of being exposed to illness and she had been admitted to a nursing home because she was no longer able to care for herself. But I am so thankful that I had the opportunity to tell her that I loved her very much. She taught me so much about life and how to work hard in the face of adversary. People have commented about how I have continued to work through my cancers diagnosis and treatment and been impressed with my determination to continue to live my life even when I do not feel well. To this I attribute to my grandmother. I learned that life is not easy but it is better to work hard and persevere instead of letting life conquer my character along the way.
Grandma I will always love you and thank you so much for being so wonderful!
This week was also marked with the uncertainty of having a job for next year. As with most school districts across the nation, the Hermiston School District is grappling with a budget crisis. Being one of the newer hires I have been quite nervous about losing my job. This week was filled with sobering meetings from my union, building principal, and superintendent. Where at every moment I had a lump in my throat that I would be dire financial strain at any moment. More than anything else I have worried about losing health insurance. As I continue to wage my battle against my cancer I have been thankful for my medical insurance. It has allowed me to get the best of care and has brought me a long way in beating this disease. I really feel for those without insurance. Especially when I look into my children's eyes and realize how much they need me around.
On a good note, my hair has started to grow back. It itches like heck but it is so nice to start getting my hair back. Also my good friend Volus is visiting from Pittsburgh. It has been such a long time since I got to see him. He will be dropping by tomorrow morning and I can not wait to see him and to catch up with him a little. Another thing for the good news column is that I have a job for next year as far as I know. I was not notified by administration that I was losing my job and then this week my union voted to cut some paid days to hire back the positions that were going to be eliminated. I am proud to be a part of a union that is so concerned with all of its members.
Well I begin radiation treatment next week. I am pretty nervous about how that will go but only time will tell and today is not the time to worry about it.
I think this has been enough for tonight. I am tired and ready to get some rest.
This past Monday, my grandmother past away. To begin to explain the roll that she played in my life you have to go back to my birth. "Grandma Clark" was always there. At every birthday, every holiday, school functions ranging from "Arts and Tarts" to band and music concert. My grandma was at little league games and boy scout courts of honor. She would come over in the afternoons to help my parents out by watching us kids after school. My grandma valued music and life experiences. She bought my tenor saxophone so I could follow my dream of music and sent me to the Boy Scouts National Jamboree back on the east coast when I was 13 years old to broaden my horizons. I would spend hours at her house in the summers building little houses and forts out of the scrap lumber that my father stored in her old carport. She would pick me up after school in Junior High so often that I only road the school bus twice in my junior high school years. Once on the way to school on my first day in seventh grade and one on the way home on the last day of ninth grade. Most days my dad would take me to school because I had Jazz band at 0 period but my grandma was there almost every day for the ride home.
Grandma Clark was so giving. It wasn't until I was in high school that I began to realize the amazing truth that was my grandma. My grandma worked so hard to give me and my brothers and sisters a life that most people only dream of. We did not only have our parents who loved and supported us in all we did but we had our grandparents. My grandmother was constantly giving to us kids. We were showered not only but her love and support for the activities we chose to do but she made sure that we had the support to participate in every opportunity that came our way.
My grandmother had been ill for quite sometime and it was really hard to see such a strong and proud woman who had given so much struggle so hard near the end. Her passing has left a very large hole in my life. These last few months have been exceptionally hard because I was not able to visit her as often as I wanted to. I had to be careful of being exposed to illness and she had been admitted to a nursing home because she was no longer able to care for herself. But I am so thankful that I had the opportunity to tell her that I loved her very much. She taught me so much about life and how to work hard in the face of adversary. People have commented about how I have continued to work through my cancers diagnosis and treatment and been impressed with my determination to continue to live my life even when I do not feel well. To this I attribute to my grandmother. I learned that life is not easy but it is better to work hard and persevere instead of letting life conquer my character along the way.
Grandma I will always love you and thank you so much for being so wonderful!
This week was also marked with the uncertainty of having a job for next year. As with most school districts across the nation, the Hermiston School District is grappling with a budget crisis. Being one of the newer hires I have been quite nervous about losing my job. This week was filled with sobering meetings from my union, building principal, and superintendent. Where at every moment I had a lump in my throat that I would be dire financial strain at any moment. More than anything else I have worried about losing health insurance. As I continue to wage my battle against my cancer I have been thankful for my medical insurance. It has allowed me to get the best of care and has brought me a long way in beating this disease. I really feel for those without insurance. Especially when I look into my children's eyes and realize how much they need me around.
On a good note, my hair has started to grow back. It itches like heck but it is so nice to start getting my hair back. Also my good friend Volus is visiting from Pittsburgh. It has been such a long time since I got to see him. He will be dropping by tomorrow morning and I can not wait to see him and to catch up with him a little. Another thing for the good news column is that I have a job for next year as far as I know. I was not notified by administration that I was losing my job and then this week my union voted to cut some paid days to hire back the positions that were going to be eliminated. I am proud to be a part of a union that is so concerned with all of its members.
Well I begin radiation treatment next week. I am pretty nervous about how that will go but only time will tell and today is not the time to worry about it.
I think this has been enough for tonight. I am tired and ready to get some rest.
Wednesday, May 13, 2009
New informaiton
Well, I guess I need to make a comment about the last post. I am really embarrassed that I made that post. It was made at a real low time where I was overwhelmingly feeling weak and helpless. It is a mission of mine to have strength and courage as I battle this cancer but there are times where the realities of this disease get to me.
At work and around others I always try to show strength, courage, and a positive attitude. I want people to think of me as a really hard worker and a nice guy. One who can carry his own weight and then some extra. Not one who needs help but the one who gives.
I guess in a way, I always want to be like the kid back on the play ground in elementary school who gets picked early to be on someones team or is call out on Red Rover. You know what I am talking about; somebody who makes a group better because they are a part of it. A person who lifts others up instead of weighing them down. That is the root of my current problems. I feel like I can not carry my weight. I mentally understand that I have cancer and I can do only so much, but in my heart I feel like a failure. Emotionally I am really down.
This cancer has placed a financial strain on my family, has kept me from visiting my grandmother much who is gravely ill in the ICU at the hospital, affected the quality of teacher I know I am, robbed some of the innocence of my children at an early age, and has strained all of the limits of my wife and I where sometimes tears are all that remains.
Emma Lee has been such a rock for me. I am at awe with Em's strength during these times but behind her continuous love and support I know she has to be so tired.
This is the hardest part of the cancer on me. It has not really been the nights on the bathroom floor, the terrific pain I have endured, or the exhaustion that limits my physical and mental capabilities. It is seemly endless nature of our struggles and challenges over the last several months.
As much as I try to always hide my real feelings and worries in the presence of others the other night when I made that last post I guess it was a window into my real worries:
Scared
Tired
and really worn out.
I have recently had some good news on the progress of my treatments. One of the two remaining tumors that I have in my chest showed no activity on my last PET Scan. The other tumors activity was much reduced. Because of this, and my low white blood cell count, I am stopping chemotherapy because the doctors believe that the chemo has done all that it can do. I am going to proceed with radiation treatment in a couple weeks after my white blood cell count has an opportunity to recover a little bit. Then in mid July, I will have another PET San to see how I am doing. My oncologist was pleased with my response to the last rounds of chemotherapy and believe this is the best course of action.
I am so glad that I had my treatments in Portland. My oncologist works in an office that was rated as the best cancer center in Portland by Portland Monthly Magazine. This list is developed from the doctors in Portland and their patients. There are also two other oncologists in the office that specialize in my type of cancer and they all consult with one and another as they decide the best course of treatment.
Now the most important part of this blog is to say thank you to all of you that have helped so much. The last few weeks have been really tough and I have not really been able to stay up with the blog like I would have liked to. For those of you that have had me and my family in their prayers I want to tell you that I have felt your prayers and do believe that god is an amazing healer and has helped me recover so much. For those who have been able to give financial gifts to my family I am so appreciative. I am not sure how I would made it to some of my treatments if it was not for the gifts that helped pay for gas and occasional lodging when necessary.
So in closing,
Friends, thank you so much!
At work and around others I always try to show strength, courage, and a positive attitude. I want people to think of me as a really hard worker and a nice guy. One who can carry his own weight and then some extra. Not one who needs help but the one who gives.
I guess in a way, I always want to be like the kid back on the play ground in elementary school who gets picked early to be on someones team or is call out on Red Rover. You know what I am talking about; somebody who makes a group better because they are a part of it. A person who lifts others up instead of weighing them down. That is the root of my current problems. I feel like I can not carry my weight. I mentally understand that I have cancer and I can do only so much, but in my heart I feel like a failure. Emotionally I am really down.
This cancer has placed a financial strain on my family, has kept me from visiting my grandmother much who is gravely ill in the ICU at the hospital, affected the quality of teacher I know I am, robbed some of the innocence of my children at an early age, and has strained all of the limits of my wife and I where sometimes tears are all that remains.
Emma Lee has been such a rock for me. I am at awe with Em's strength during these times but behind her continuous love and support I know she has to be so tired.
This is the hardest part of the cancer on me. It has not really been the nights on the bathroom floor, the terrific pain I have endured, or the exhaustion that limits my physical and mental capabilities. It is seemly endless nature of our struggles and challenges over the last several months.
As much as I try to always hide my real feelings and worries in the presence of others the other night when I made that last post I guess it was a window into my real worries:
Scared
Tired
and really worn out.
I have recently had some good news on the progress of my treatments. One of the two remaining tumors that I have in my chest showed no activity on my last PET Scan. The other tumors activity was much reduced. Because of this, and my low white blood cell count, I am stopping chemotherapy because the doctors believe that the chemo has done all that it can do. I am going to proceed with radiation treatment in a couple weeks after my white blood cell count has an opportunity to recover a little bit. Then in mid July, I will have another PET San to see how I am doing. My oncologist was pleased with my response to the last rounds of chemotherapy and believe this is the best course of action.
I am so glad that I had my treatments in Portland. My oncologist works in an office that was rated as the best cancer center in Portland by Portland Monthly Magazine. This list is developed from the doctors in Portland and their patients. There are also two other oncologists in the office that specialize in my type of cancer and they all consult with one and another as they decide the best course of treatment.
Now the most important part of this blog is to say thank you to all of you that have helped so much. The last few weeks have been really tough and I have not really been able to stay up with the blog like I would have liked to. For those of you that have had me and my family in their prayers I want to tell you that I have felt your prayers and do believe that god is an amazing healer and has helped me recover so much. For those who have been able to give financial gifts to my family I am so appreciative. I am not sure how I would made it to some of my treatments if it was not for the gifts that helped pay for gas and occasional lodging when necessary.
So in closing,
Friends, thank you so much!
Monday, May 11, 2009
help
Help.
That seems to be the only word I have in my head right now. I get so scared about the continuing arrival of medical bills, I worry about losing my job next year due to budget cuts, I worry about being able to get the rest I need to get healthy. I have been so fatigued. If you have ever experienced true fatigue you will be able to appreciate crashing anywhere and anywhere. I am so tired... ... ..talk to you later
That seems to be the only word I have in my head right now. I get so scared about the continuing arrival of medical bills, I worry about losing my job next year due to budget cuts, I worry about being able to get the rest I need to get healthy. I have been so fatigued. If you have ever experienced true fatigue you will be able to appreciate crashing anywhere and anywhere. I am so tired... ... ..talk to you later
Tuesday, May 5, 2009
Can't Sleep ... ... how are you all doing
This last treatment has really knocked me to my knees. For the most part, prior to this last treatment I have been able not to get sick. I have been very nauseous but not sick. Not so this last time. I spent the better part of two days on the floor of the bathroom. I was so ill that I called in sick on Monday and took a day off of work. I probably should have taken Tuesday as well but missing too many days is just not an option.
I have been having a lot of trouble sleeping lately and when I do sleep I seem to be having lots of random nightmares. It is hard to keep a positive outlook all of the time when my subconscious continually reminds me of my situation. I am going back on Ambian CR in the hopes that I can get some better sleep again. I worry about taking that drug too much because it can be habit forming but at this very moment i just want some decent sleep.
Work is lightening up a bit now. Today 66 of my 92 AP Government and Politics students took the Ap Exam. I have four more that will be taking the make-up exam on the 15th so over all I had a good number take it. This year, even though I was ill and the quality of my instruction suffered i do believe that many of my students did well on the exam. Quite a few have told me just today that the exam was a lot easier than the one's i gave them and that they felt fairly prepared with answering all of the questions. I am just glad that i am not going to be grading 92 chapter exams every six days anymore. That was really starting to wear me down.
If some of you haven't heard I got a small sort of promotion at work. I am the secondary site coordinator for summer school this year at Hermiston High. This position is like Principal so it is nice o be doing a little admin work. I like summer school a lot and being able to be the coordinator has allowed for me to do some things that I have always wanted to do on my own. I got to hire a staff, build a schedule, and create my on school handbook and curriculum.
Well I am going to try and get some sleep. I have to e at HHS at 6:30 am tomorrow morning and i do need some sleep.
I have been having a lot of trouble sleeping lately and when I do sleep I seem to be having lots of random nightmares. It is hard to keep a positive outlook all of the time when my subconscious continually reminds me of my situation. I am going back on Ambian CR in the hopes that I can get some better sleep again. I worry about taking that drug too much because it can be habit forming but at this very moment i just want some decent sleep.
Work is lightening up a bit now. Today 66 of my 92 AP Government and Politics students took the Ap Exam. I have four more that will be taking the make-up exam on the 15th so over all I had a good number take it. This year, even though I was ill and the quality of my instruction suffered i do believe that many of my students did well on the exam. Quite a few have told me just today that the exam was a lot easier than the one's i gave them and that they felt fairly prepared with answering all of the questions. I am just glad that i am not going to be grading 92 chapter exams every six days anymore. That was really starting to wear me down.
If some of you haven't heard I got a small sort of promotion at work. I am the secondary site coordinator for summer school this year at Hermiston High. This position is like Principal so it is nice o be doing a little admin work. I like summer school a lot and being able to be the coordinator has allowed for me to do some things that I have always wanted to do on my own. I got to hire a staff, build a schedule, and create my on school handbook and curriculum.
Well I am going to try and get some sleep. I have to e at HHS at 6:30 am tomorrow morning and i do need some sleep.
Tuesday, April 21, 2009
A week later ... ... ...
I think that if there is phase that best represents my last couple of weeks would be "Better Living Through Chemistry". I have been thinking that maybe I need a t-shirt.
It is really shocking to me when I think about the number of different pharmaceuticals I take in a week at different times. But while I am concerned about side effects and I do not like to normally take medication, these wonders of the modern era have allowed me to have somewhat of a normal life. It has taken me several weeks to find the right balance of medication and what and when to take meds dependent upon certain symptoms, but I am having a pretty good life. The one issue that does not seem to change is the fatigue. I am so easily tired. Sometimes I am able to carry out normal life activities and at other times it is really hard to get out of bed or a chair. It is not only physical fatigue that drags me down from time to time but the mental fatigue is the most frustrating. I really struggle with new information. I struggle when I meet new people and their names and faces, I make all sorts of little errors all day long, and I have problems doing everything from our bills and staying on top of the medical appointments. My absolute savior has been Em. No better example than this last Friday when I had my first appointment with the radiologist and I felt awful. I was so tired and out of it that I when we registered with the check in nurse she had to ask questions twice and even three times before I was able to respond. It was like I heard what she said buy my brain did not do anything. There is no way I could be doing as well that I am if it wasn't for Emma Lee. She has been the one to do all of my scheduling, transport me to the appointments, and has just been my wonderful support. She take care of my radiologist, home health nurse and supplies, oncologist, and on and on. So nice.
Like I mentioned, this last week Emma Lee and I met with the radiologist for the first time in the Tri-Cities. Just having that meeting reminded me that I am certainly not through the woods by any means yet and just the seriousness of cancer. There are so many consequences of cancer treatment. I have just begun to accept the realities that chemotherapy has meant for me for the rest of my life and now I am trying to grip the realities that radiation therapy to my thoracic cavity will mean. Unfortunately, my radiation field will include portions of my heart, lungs, and esophagus and will certainly cause me some issues immediately and potentially quite serious in the future. Too much to think about, I wish I could just get away sometimes.
I was so happy this weekend. I was able to accomplish a Herculean feat. It took me all weekend, multiple attempts but I did it. I mowed my lawn. It is funny what sort of things that I consider accomplishments but it felt so good to be able to do it myself. Now the only problem is the grass clippings in the back of my pick-up; but one thing at a time please. It also was so nice to be outside. I must have been quite the sight though. To protect my skin from the sun I was wearing a long sleeved shirt, long pants, a big Aussie type hat, and a medical mask over my mouth and nose. I looked like I was working toxic waste sight and not my beautifu lawn.
Oh yeah. We had a guests. Diane and Eric Harp and two of their kids stopped by our place on last Friday night on their way to visit reletives. It was really nice to see them and catch up a little. I am so amazed how big their boys are getting. I remember when Diane had Taylor and tha just does not seem like that long ago. Those were great times in the old Heritage High planning room. I think about those years a lot. Steve and Lori; Jim, Russ, and Diane; Carol, Mat, and Eric; Jennifer, Kathy, and Tim. What a crew and wonderful times and memories. Oh yeah and thanks Steve for that big chocolate bar you gave to me my first year of teaching. I do not remember why you gave it to me but I for some reason remember you giving me a great big Hershey Bar.
Well, good freinds I think I am going to bring this entry to a close. Thank you former Heritage teachers now at Union for the letters and good will wishes. Lisa I was so excited when I got your envelop and read your words. Dave your letter was classic. To the Hermiston community who has so opened their arms to me and my family I want to say;
thank you so much.
It is really shocking to me when I think about the number of different pharmaceuticals I take in a week at different times. But while I am concerned about side effects and I do not like to normally take medication, these wonders of the modern era have allowed me to have somewhat of a normal life. It has taken me several weeks to find the right balance of medication and what and when to take meds dependent upon certain symptoms, but I am having a pretty good life. The one issue that does not seem to change is the fatigue. I am so easily tired. Sometimes I am able to carry out normal life activities and at other times it is really hard to get out of bed or a chair. It is not only physical fatigue that drags me down from time to time but the mental fatigue is the most frustrating. I really struggle with new information. I struggle when I meet new people and their names and faces, I make all sorts of little errors all day long, and I have problems doing everything from our bills and staying on top of the medical appointments. My absolute savior has been Em. No better example than this last Friday when I had my first appointment with the radiologist and I felt awful. I was so tired and out of it that I when we registered with the check in nurse she had to ask questions twice and even three times before I was able to respond. It was like I heard what she said buy my brain did not do anything. There is no way I could be doing as well that I am if it wasn't for Emma Lee. She has been the one to do all of my scheduling, transport me to the appointments, and has just been my wonderful support. She take care of my radiologist, home health nurse and supplies, oncologist, and on and on. So nice.
Like I mentioned, this last week Emma Lee and I met with the radiologist for the first time in the Tri-Cities. Just having that meeting reminded me that I am certainly not through the woods by any means yet and just the seriousness of cancer. There are so many consequences of cancer treatment. I have just begun to accept the realities that chemotherapy has meant for me for the rest of my life and now I am trying to grip the realities that radiation therapy to my thoracic cavity will mean. Unfortunately, my radiation field will include portions of my heart, lungs, and esophagus and will certainly cause me some issues immediately and potentially quite serious in the future. Too much to think about, I wish I could just get away sometimes.
I was so happy this weekend. I was able to accomplish a Herculean feat. It took me all weekend, multiple attempts but I did it. I mowed my lawn. It is funny what sort of things that I consider accomplishments but it felt so good to be able to do it myself. Now the only problem is the grass clippings in the back of my pick-up; but one thing at a time please. It also was so nice to be outside. I must have been quite the sight though. To protect my skin from the sun I was wearing a long sleeved shirt, long pants, a big Aussie type hat, and a medical mask over my mouth and nose. I looked like I was working toxic waste sight and not my beautifu lawn.
Oh yeah. We had a guests. Diane and Eric Harp and two of their kids stopped by our place on last Friday night on their way to visit reletives. It was really nice to see them and catch up a little. I am so amazed how big their boys are getting. I remember when Diane had Taylor and tha just does not seem like that long ago. Those were great times in the old Heritage High planning room. I think about those years a lot. Steve and Lori; Jim, Russ, and Diane; Carol, Mat, and Eric; Jennifer, Kathy, and Tim. What a crew and wonderful times and memories. Oh yeah and thanks Steve for that big chocolate bar you gave to me my first year of teaching. I do not remember why you gave it to me but I for some reason remember you giving me a great big Hershey Bar.
Well, good freinds I think I am going to bring this entry to a close. Thank you former Heritage teachers now at Union for the letters and good will wishes. Lisa I was so excited when I got your envelop and read your words. Dave your letter was classic. To the Hermiston community who has so opened their arms to me and my family I want to say;
thank you so much.
Monday, April 13, 2009
patience.
I am so sorry for keeping you all in the dark for so long but the last seven days have been really rough on me and have not felt able to blog. As you all may remember from my last entry I was going to Portland to have a pic line put in my arm to help battle the vasiculitis in my veins. Well that proved to be more than a walk in the park.
So here is the story:
On Friday the 3rd, after attempting to teach for the day Em and I headed to Portland to find out what was wrong with my arm. The doctors were worried that I might have had a blood clot and that could have led to a stroke. To make matters a little more serious, I have been having a lot of trouble with my blood pressure. Every time I have gone to the doctors in since discovering the tumors my blood pressure has been elevated and it has not been brought under control with medication. The doc's had already tried a regiment of steroids to address the arm problems and all that they did was to make me really sick. The trip down on Friday was quite nerve racking. I was very motion sick, my arm burned like it had been dipped in acid, and I was exhausted from not sleeping in several days. Once we got to Portland I was quickly admitted to see the doc and he had a couple tricks that seemed to help. The best thing that he did for me was a treatment of IV morphine. For the first time in days I was able to rest without pain and I slept. As for what happened after that I am not sure. It is a good thing that Em was with me because I was out of it. But the ride home was tough because at about The Dalles the Morphine wore off and my only option was some new pain medication that the doctor sent me home with. It wasn't nearly as effective.
I then had Saturday and Sunday to try to feel better but I was wiped out. The new pain medication put me in an awful state. At one point I think I may have gotten over medicated and my body was just going in and out of control. Between the pain killers, steroids, anti naussia medication, high blood pressure,and anti agitation meds I was sick. Sadly Saturday was RyLee's 4th Birthday Party and I was in bed for the whole time. I could not even get up long enough to be there for the singing of Happy Birthday. I have never felt so wiped out. I spent Sunday looking at pictures of the party and hearing about the adventures that RyLee had with her girl friends. It sounded wonderful! Princesses, dresses, jewelry, dancing, cupcakes, crafts, and lots of little girl giggles. I really am sad that I missed it. Emma Lee did an amazing job planning and putting on RyLee's BDay party. Especially while balancing my needs, work, Katelyn, and just everyday household stuff. AMAZING. I want to hire a maid to help Emma Lee out but what she really needs is a good vacation.
That brings us to Sunday night. My brother Joe and his wife Kelsey who live in Salem opened their house up to us to spend the night. So Em and I loaded up in our Toyota Highlander once again and took off for Salem. I was very very ill. I think we stopped 20 times between Pendleton and Salem. Every corner, curve, and bump in the road became my nemesis. It was nice to see both of them but I just sat in the arm chair mostly and went to bed. I was really appreciative that they had dinner made for us. Even though I did not feel like eating the food looked so good I sat down and ate a little. Then Monday morning we proceeded to the hospital to have my pic line put in. It went okay. The IV nurse had a little trouble getting it in the right place because of all of the problems in my chest with the thoracic surgery that I had in February, the location of the tumors, and the sensitivity I have been having. There was a point where I felt like a hair dryer was blowing on me and I had a lot of trouble breathing. The nurse had to back out the line and position it a little different way and then I was ok. I took almost four hours to place the pic line. By the time we got out of the hospital I was so tired and once again so drugged up that I felt like crap. We then started the long trip home.
I went to work on Tuesday. That was enough.
Then on Wednesday the day started okay but after teaching a couple of period I had a episode where I could not breath very well. It did not last very long but it required me to go to the Hospital in Walla Walla to see what was going on. The problem turned out to be that the pic line had moved on me in my chest and caused a reaction. But other than that episode the pic line seemed to be okay so Emma and I quickly headed back to Pendleton because Wednesday was RyLee's birthday and the family was coming over for presents and cake and ice cream to celebrate the actual day. I was so happy that I was able to be there for that. I was tired but I hide it as much as possible because I wanted RyLee's day to be about her and not my illness.
On Thursday I had to do something that I havn't had to do in years. One of the things that I have given up to conserve my energy and because many of my meds will not allow me to do is dive. So I called my father and asked him if he could come to my school and give me a ride home. It probably has been 15 years since I called my dad from school and asked for a ride home. I had to get home because RyLee's recital was that night at the Pendleton Convention Center. The plan was that I would watch Katelyn and we would be picked up later by Emma Lee's mom who would drive us to the recital. This made it easier but the recital was really long and the ballet group was the last to perform. RyLee was so beautiful and her performance was really well done.
Which brings us to Friday a chemo day. Well in order to get my chemo treatment my brother-in- law and father-in-law worked out a plan where my Brother-in-law would drive my father-in-law's new pickup down and back to Portland in one day to give Emma Lee and I a little break. It was so nice that Colin was able to do that. The day was long because it was my first treatment using the pic line and because of the problems that I had with the pic line my doctor wanted us to stay in the Portland area for a while to make sure that their would be no problem before we hit the road home to Pendleton. But all went okay. Was tired and more nauseated than I ever had been but okay.
Then it hit. This last weekend I have been so wiped out and nauseated. Easter Weekend :( I was able to get myself together enough to take my family to Easter Brunch at Wildhorse. The kids loved it. They got to eat all sorts of fun food and even had choclate covered rice crispy treats from a chocolate fountain. It was a lot of fun. After we got home I helped Emma get the kids down for naps and then I worked on resting too.
Now it is Monday and after having a real rough night I am at work. I have just taken a couple minutes to take the time to post this blog that I wrote mostly last night. I hope you are all are doing well. sorry for all of the errors and typos but not much time to proof read.
So here is the story:
On Friday the 3rd, after attempting to teach for the day Em and I headed to Portland to find out what was wrong with my arm. The doctors were worried that I might have had a blood clot and that could have led to a stroke. To make matters a little more serious, I have been having a lot of trouble with my blood pressure. Every time I have gone to the doctors in since discovering the tumors my blood pressure has been elevated and it has not been brought under control with medication. The doc's had already tried a regiment of steroids to address the arm problems and all that they did was to make me really sick. The trip down on Friday was quite nerve racking. I was very motion sick, my arm burned like it had been dipped in acid, and I was exhausted from not sleeping in several days. Once we got to Portland I was quickly admitted to see the doc and he had a couple tricks that seemed to help. The best thing that he did for me was a treatment of IV morphine. For the first time in days I was able to rest without pain and I slept. As for what happened after that I am not sure. It is a good thing that Em was with me because I was out of it. But the ride home was tough because at about The Dalles the Morphine wore off and my only option was some new pain medication that the doctor sent me home with. It wasn't nearly as effective.
I then had Saturday and Sunday to try to feel better but I was wiped out. The new pain medication put me in an awful state. At one point I think I may have gotten over medicated and my body was just going in and out of control. Between the pain killers, steroids, anti naussia medication, high blood pressure,and anti agitation meds I was sick. Sadly Saturday was RyLee's 4th Birthday Party and I was in bed for the whole time. I could not even get up long enough to be there for the singing of Happy Birthday. I have never felt so wiped out. I spent Sunday looking at pictures of the party and hearing about the adventures that RyLee had with her girl friends. It sounded wonderful! Princesses, dresses, jewelry, dancing, cupcakes, crafts, and lots of little girl giggles. I really am sad that I missed it. Emma Lee did an amazing job planning and putting on RyLee's BDay party. Especially while balancing my needs, work, Katelyn, and just everyday household stuff. AMAZING. I want to hire a maid to help Emma Lee out but what she really needs is a good vacation.
That brings us to Sunday night. My brother Joe and his wife Kelsey who live in Salem opened their house up to us to spend the night. So Em and I loaded up in our Toyota Highlander once again and took off for Salem. I was very very ill. I think we stopped 20 times between Pendleton and Salem. Every corner, curve, and bump in the road became my nemesis. It was nice to see both of them but I just sat in the arm chair mostly and went to bed. I was really appreciative that they had dinner made for us. Even though I did not feel like eating the food looked so good I sat down and ate a little. Then Monday morning we proceeded to the hospital to have my pic line put in. It went okay. The IV nurse had a little trouble getting it in the right place because of all of the problems in my chest with the thoracic surgery that I had in February, the location of the tumors, and the sensitivity I have been having. There was a point where I felt like a hair dryer was blowing on me and I had a lot of trouble breathing. The nurse had to back out the line and position it a little different way and then I was ok. I took almost four hours to place the pic line. By the time we got out of the hospital I was so tired and once again so drugged up that I felt like crap. We then started the long trip home.
I went to work on Tuesday. That was enough.
Then on Wednesday the day started okay but after teaching a couple of period I had a episode where I could not breath very well. It did not last very long but it required me to go to the Hospital in Walla Walla to see what was going on. The problem turned out to be that the pic line had moved on me in my chest and caused a reaction. But other than that episode the pic line seemed to be okay so Emma and I quickly headed back to Pendleton because Wednesday was RyLee's birthday and the family was coming over for presents and cake and ice cream to celebrate the actual day. I was so happy that I was able to be there for that. I was tired but I hide it as much as possible because I wanted RyLee's day to be about her and not my illness.
On Thursday I had to do something that I havn't had to do in years. One of the things that I have given up to conserve my energy and because many of my meds will not allow me to do is dive. So I called my father and asked him if he could come to my school and give me a ride home. It probably has been 15 years since I called my dad from school and asked for a ride home. I had to get home because RyLee's recital was that night at the Pendleton Convention Center. The plan was that I would watch Katelyn and we would be picked up later by Emma Lee's mom who would drive us to the recital. This made it easier but the recital was really long and the ballet group was the last to perform. RyLee was so beautiful and her performance was really well done.
Which brings us to Friday a chemo day. Well in order to get my chemo treatment my brother-in- law and father-in-law worked out a plan where my Brother-in-law would drive my father-in-law's new pickup down and back to Portland in one day to give Emma Lee and I a little break. It was so nice that Colin was able to do that. The day was long because it was my first treatment using the pic line and because of the problems that I had with the pic line my doctor wanted us to stay in the Portland area for a while to make sure that their would be no problem before we hit the road home to Pendleton. But all went okay. Was tired and more nauseated than I ever had been but okay.
Then it hit. This last weekend I have been so wiped out and nauseated. Easter Weekend :( I was able to get myself together enough to take my family to Easter Brunch at Wildhorse. The kids loved it. They got to eat all sorts of fun food and even had choclate covered rice crispy treats from a chocolate fountain. It was a lot of fun. After we got home I helped Emma get the kids down for naps and then I worked on resting too.
Now it is Monday and after having a real rough night I am at work. I have just taken a couple minutes to take the time to post this blog that I wrote mostly last night. I hope you are all are doing well. sorry for all of the errors and typos but not much time to proof read.
Wednesday, April 8, 2009
sorry for not posting
I am so sorry for not posting for some time but the last seven days have been real tough. Last Friday I arrived at school planning on teaching a whole day but my arm left arm had really been hurting me. I thought I would just take my heating pack and try to keep heat on it for the day because that seemed to help Thursday evening. But after just a couple of hours one of my coworkers noticed that I did not look well and looked at my arm and said that I needed to go home and call my doctor. Well, I did relent on the seond issue and called my oncologist who was very concerned that I was experiencing so much pain after they had prescribed me the steriod which should have cleared this up. So he wanted me in Portland right away because he though I might have a blood clot in my arm, not good! Needless to say Emma Lee and I quickly made our way to Portland where test concluded that I did not have a blood clot but the vein in my arm where the chemo was administered was greatly "distressed". They put me on a whole host of new drugs and scheduled me to come back to Portland on the following Monday to have a pic line put in
I will continue later. I need to go to bed. I am soo tired
Chris
I will continue later. I need to go to bed. I am soo tired
Chris
Wednesday, April 1, 2009
A short update
Many of you are probably wondering if I was sent to the ER Saturday night and I am happy to announce that I got to sleep (well sort of sleep) in my own bed. While I have been having tremendous pain in my left arm and hand as a result of the chemo treatments we have been able so far to keep the problem from getting too much worse. The doc. put me on a strong steroid to try to battle the swelling and pain in my arm and he also heard that I have always wanted to be more like my favorite Caliefornia govenurh (note the spelling, its phonetic) and thought this might help "pump me up". So if you happen to see me around, notice how sculpted I am beginning to look. I do believe that I am starting to become quite the image of Greek mythological stature since I have been receiving steroids since my fabulous stay in the luxurious Providence Portland Medical Center and have been receiving my regular injections since starting chemo, and now I have my own personal prescription I get to take twice a day. I have inquired about receiving a little professional advice from people like Barry Bonds and Floyd Landis on what might be the best way to balance and conceal my steroid usage but they seemed not too interested in making any sort of comment on the issue.
I do have sympathy for all of the people around me for the next few days though because the side effects of my newest pharmaceutical wonder are "increased agitation, moodiness, and sleeplessness". Sounds like a lot of fun huh!?! What is going to be even more fun is that I am going to have a mid-line put in in the next couple of days since I am having so much trouble with my veins. I am not looking forward to that but it is what it is.
It has been really hard continuing to go to work. Although I do believe that I is good for me to get off my bum and contribute to society it really takes a toll on my body. I hurt everywhere. My brain is like oatmeal. My mouth feels like the taste buds have been replaced with strips of aluminum, and various other metal alloys. My lips are cracked and along with my mouth burn most of the time. Then there is my digestinal tract, you do not want to know about that!
Well chin up, Demianew! Press forward and tomorrow will be better.
I do have sympathy for all of the people around me for the next few days though because the side effects of my newest pharmaceutical wonder are "increased agitation, moodiness, and sleeplessness". Sounds like a lot of fun huh!?! What is going to be even more fun is that I am going to have a mid-line put in in the next couple of days since I am having so much trouble with my veins. I am not looking forward to that but it is what it is.
It has been really hard continuing to go to work. Although I do believe that I is good for me to get off my bum and contribute to society it really takes a toll on my body. I hurt everywhere. My brain is like oatmeal. My mouth feels like the taste buds have been replaced with strips of aluminum, and various other metal alloys. My lips are cracked and along with my mouth burn most of the time. Then there is my digestinal tract, you do not want to know about that!
Well chin up, Demianew! Press forward and tomorrow will be better.
Saturday, March 28, 2009
another pass through the chemo line
Hello everyone, I apologize that I haven't posted in a while but I just have not been feeling too well. Yesterday, I almost did not have my second chemo treatment. My white blood count was borderline to being too low to get treatment. But we pressed forward. So I went to my chair and began another trip down chemo lane. It did not go so well. You all may remember that I mentioned last time that they had to put lidocane in with one of my chemo meds so I could handle the pain, unfortunately the lidocane is burning the blood vessels in my arm and they are now at risk of infection. To make matters a little more complicated as I am writing this blog we are monitoring the streaking and black marks on my arm to see if I am going to be making a trip to the ER sometime in the next few hours. I sure hope not. I have been in the hospital enough!!! Oh well not too much I can do now. On the up side I am surprising the doctors for the fact that I haven't lost my hair yet. Most Hodgkin's patients lose their hair right away. I joked with the doctors and the nurses not to talk about it so loudly because the reason I haven't lost my hair yet is because my hair doesn't know I have cancer. So sshhhhhh... Maybe I will get to keep it.
I find it so interesting that when people see me they often comment on how well I look. While I am glad that I still look so handsome and dashing, I sometimes wonder if people would rather if I looked like death warmed over. I actually work pretty really hard to keep my spirits up and to always present a happy outward expression to others. I shower every day, still iron my clothes, and buff my shoes before I head to school. I am still alive and very thankful for everyday I get to have to share with my friends and family. While it takes me a little longer to get up in the morning, to take a shower, to walk down the hall at school, grade papers, and just carry out my everyday functions, it is still wonderful. But ... ...
It is hard.
But they say that the best things in life usually are.
And now for a random transition. (I have been having a lot of these)
The things in my life that I have been reflecting about:
1. the value of cushioned chairs
2. the ticking sound of a mechanical clock
3. the magic of remote controls
4. driving
5. the mystery of the mailbox deliveries (cards vs. medical statements)
6. the ties that bind (family, friends, integrity, and love)
7. Spring
8. bark dust
9. the hearts of humankindand
... ...
10. birthdays
As I am writing this blog my nurse, the caretaker of the house, the mommy to two adorable girls, the program technician for the Farm Service Agency for the USDA, the daughter of Chuck and Dinah, and my wife is scurrying around keeping me comfortable, the kids happy, the house presentable, and planning a bithday parties for our daughter next week and one for her mother tomorrow. She has to be soo tired but she keeps a smile on her face and just keeps carring on.
amazing!
In closing, I would like to thank all who have continued to send me messages. From former students who have justified that I have done some good as a classroom teacher, to former
Boy Scout scoutmasters and troop members, to the Knights of Columbus for the continued prayers and the beautiful Mass (so sorry I could not attend), to all of the prayer circles that keep me and my stuggels in their thoughts, my teaching partner that has been driving me back and forth everyday from Pendleton to Hermiston to teach (I do not think she knows how tired I really am and how I could not work if it wasn't for her), to the wonderful meals people have brought over to my family (although I have not been in the mood to eat too much my kids devouer all of the great meals), to my wonderful freinds and family, and to the whole community that has come together to help my family overcome this disease. Thank you.
For my wife, I must acknowledge the amazing outpouring of support that her fellow coworkers locally and across the great state of Oregon have given to her so that she can be away from work to help care for me and transport me to and from all of my medical appointments. Thank you.
For those who wish to help in a specific way please email either me at chris.demianew@gmail.com or contact one of the helping leads posted on my last blog. I have rewritten this last paragraph twenty times trying to find the words to ask for help but
I just can not seem to get them to say what I want them to say. The problem is that I am out of sick leave and have few options if I get too sick to work, traveling costs are expensive, and I am really really tired.
Well, enough of that serious stuff. Now I need to ccheck my arm snd call the oncologist back and see if I get the honor of a trip to St. Anthony's Hospital. Thanks again and good night.
I find it so interesting that when people see me they often comment on how well I look. While I am glad that I still look so handsome and dashing, I sometimes wonder if people would rather if I looked like death warmed over. I actually work pretty really hard to keep my spirits up and to always present a happy outward expression to others. I shower every day, still iron my clothes, and buff my shoes before I head to school. I am still alive and very thankful for everyday I get to have to share with my friends and family. While it takes me a little longer to get up in the morning, to take a shower, to walk down the hall at school, grade papers, and just carry out my everyday functions, it is still wonderful. But ... ...
It is hard.
But they say that the best things in life usually are.
And now for a random transition. (I have been having a lot of these)
The things in my life that I have been reflecting about:
1. the value of cushioned chairs
2. the ticking sound of a mechanical clock
3. the magic of remote controls
4. driving
5. the mystery of the mailbox deliveries (cards vs. medical statements)
6. the ties that bind (family, friends, integrity, and love)
7. Spring
8. bark dust
9. the hearts of humankindand
... ...
10. birthdays
As I am writing this blog my nurse, the caretaker of the house, the mommy to two adorable girls, the program technician for the Farm Service Agency for the USDA, the daughter of Chuck and Dinah, and my wife is scurrying around keeping me comfortable, the kids happy, the house presentable, and planning a bithday parties for our daughter next week and one for her mother tomorrow. She has to be soo tired but she keeps a smile on her face and just keeps carring on.
amazing!
In closing, I would like to thank all who have continued to send me messages. From former students who have justified that I have done some good as a classroom teacher, to former
Boy Scout scoutmasters and troop members, to the Knights of Columbus for the continued prayers and the beautiful Mass (so sorry I could not attend), to all of the prayer circles that keep me and my stuggels in their thoughts, my teaching partner that has been driving me back and forth everyday from Pendleton to Hermiston to teach (I do not think she knows how tired I really am and how I could not work if it wasn't for her), to the wonderful meals people have brought over to my family (although I have not been in the mood to eat too much my kids devouer all of the great meals), to my wonderful freinds and family, and to the whole community that has come together to help my family overcome this disease. Thank you.
For my wife, I must acknowledge the amazing outpouring of support that her fellow coworkers locally and across the great state of Oregon have given to her so that she can be away from work to help care for me and transport me to and from all of my medical appointments. Thank you.
For those who wish to help in a specific way please email either me at chris.demianew@gmail.com or contact one of the helping leads posted on my last blog. I have rewritten this last paragraph twenty times trying to find the words to ask for help but
I just can not seem to get them to say what I want them to say. The problem is that I am out of sick leave and have few options if I get too sick to work, traveling costs are expensive, and I am really really tired.
Well, enough of that serious stuff. Now I need to ccheck my arm snd call the oncologist back and see if I get the honor of a trip to St. Anthony's Hospital. Thanks again and good night.
Thursday, March 19, 2009
March 19th
Hello,
Well, a week has almost passed since my first chemo treatment. Overall I am doing okay. The biggest issue that I am having so far is that my mouth is completely raw. On Monday, my oncologist prescribed me a mouth wash which taste a little like banana and has the consistency of pudding. If you can imagine that, try to imagine swishing pudding in your mouth. (quite the visual huh!) It doesn't work too well, but it is better than nothing. The medication helps for about 45 minutes but then it wares off and the pain returns. Not Fun. I am pretty tired most of the time and every night at about 6:30 I get a migraine headache. I think I am getting that from teaching all day and I just get exhausted. My body also hurts in more places than I thought could hurt. I am still really sore from the thoracic surgery from a couple of weeks ago but now every joint in my body is so swollen. I try to move around to help from it getting to bad but my energy just doesn't seem to last. So, I tend to sit around and just throb everywhere.
Another hard thing is that my kids have not been well. RyLee has had chronic croup, and little Katelyn has been battling something for a while now too. They want to be with their daddy so much but with my raw mouth I can not be around them too much for risk of infection. The good news is that our new and wonderful pediatrician gave us antibiotics for the two girls so I am thinking that they will be getting better soon. I am going to get enough energy saved up to take the girls to the park during spring break and spend some time with them. I know I might over do it a little but for them it is sooo worth it.
Emma Lee is an amazing person. I really do not know how she has been keeping up. This week alone she had to take the girls to the doctor in Walla Walla, work out day care because our providers daughter was sent home from school ill (Everybody just seems to be ill), go to work, take care of all of our banking and personal business, take care of three sick people, laundry, baths for the girls, dishes, and on and on and on. I know she is just exhausted but every morning she gets up first and gets the girls ready and makes my morning drink(it helps my mouth), packs the daycare bag, and somehow gets herself put together looking amazing. I love her so much. I will give her some more help as soon as I can. I am thankful that her parents have decided to have the girls over for a "sleep over" for tonight so she can get some rest. It was also really nice that my mom reschedule her morning yesterday so she could help watch the girls when we did not have a daycare option and Em really needed to go into work. Em is working so hard.
A message to all who are following this blog:
I have found out that some people are having trouble posting or are not comfortable about posting . I just wanted to say that if that applies to you feel free to email me at chris.demianew@gmail.com or demianew@gmail.com to contact Emma Lee. Getting a message from you often is the little lift that helps to carry us onto the next challenge.
Another note is about the wonderful contact people who are helping us out. To help Emma Lee and I many people have volunteered to coordinate the ways people can help us out. Below is a list of the people who are being kind of a "lead" helper and if you would like to help they would love to hear from you.
In Pendleton:
Tom and Karen Demianew
45667 Best Rd
Pendleton, OR 97801
In Hermiston:
Ethan McDonald
ethan.mcdonald@hermiston.k12.or.us
&
Jessica Charleton
jessica.charleton@hermiston.k12.or.us
In Vancouver:
Patti Lundy
plundy@egreen.wednet.edu
I really am uncomfortable about asking for help. But I also am the kind of person that when I want to help somebody out I do not like not knowing what I can do to help or feeling like not being able to provide someting that is needed. So, I am trying to make it as open as possible for people to know how they can help and who to talk to. One of the biggest ways people can help is if you want to make a donation to help my family shoulder the costs of my treatments Patti and Ethan both have deposit slips to the account set up at Bank of America. They are the most wonderful people and I appreciate so much what they are doing to help me out. If you would like the account number just email me and I can send that to you or I can mail a slip if you would like. My mailing address is 704 SW 28th street, Pendleton, OR 97801
As you can imagine we are still in the early stages of my treatment and it will most likely get worse before I get better. I wish that I could take more time off to rest but my sick leave has been exhausted and I now take unpaid leave if something else doesn't work out. I am so thankful for the meals that have been provided for my family. It has been a BIG help to have all of the assistance with the meals. Evenings are so hard on Emma Lee and I and having a meal that is easy to get ready is a big plus.
As for all of you, thank you for your continued prayers and messages. It is so nice to open my email or mailbox and see a message from you. I hope you are all well and I look forward to posting again soon.
Chris
Well, a week has almost passed since my first chemo treatment. Overall I am doing okay. The biggest issue that I am having so far is that my mouth is completely raw. On Monday, my oncologist prescribed me a mouth wash which taste a little like banana and has the consistency of pudding. If you can imagine that, try to imagine swishing pudding in your mouth. (quite the visual huh!) It doesn't work too well, but it is better than nothing. The medication helps for about 45 minutes but then it wares off and the pain returns. Not Fun. I am pretty tired most of the time and every night at about 6:30 I get a migraine headache. I think I am getting that from teaching all day and I just get exhausted. My body also hurts in more places than I thought could hurt. I am still really sore from the thoracic surgery from a couple of weeks ago but now every joint in my body is so swollen. I try to move around to help from it getting to bad but my energy just doesn't seem to last. So, I tend to sit around and just throb everywhere.
Another hard thing is that my kids have not been well. RyLee has had chronic croup, and little Katelyn has been battling something for a while now too. They want to be with their daddy so much but with my raw mouth I can not be around them too much for risk of infection. The good news is that our new and wonderful pediatrician gave us antibiotics for the two girls so I am thinking that they will be getting better soon. I am going to get enough energy saved up to take the girls to the park during spring break and spend some time with them. I know I might over do it a little but for them it is sooo worth it.
Emma Lee is an amazing person. I really do not know how she has been keeping up. This week alone she had to take the girls to the doctor in Walla Walla, work out day care because our providers daughter was sent home from school ill (Everybody just seems to be ill), go to work, take care of all of our banking and personal business, take care of three sick people, laundry, baths for the girls, dishes, and on and on and on. I know she is just exhausted but every morning she gets up first and gets the girls ready and makes my morning drink(it helps my mouth), packs the daycare bag, and somehow gets herself put together looking amazing. I love her so much. I will give her some more help as soon as I can. I am thankful that her parents have decided to have the girls over for a "sleep over" for tonight so she can get some rest. It was also really nice that my mom reschedule her morning yesterday so she could help watch the girls when we did not have a daycare option and Em really needed to go into work. Em is working so hard.
A message to all who are following this blog:
I have found out that some people are having trouble posting or are not comfortable about posting . I just wanted to say that if that applies to you feel free to email me at chris.demianew@gmail.com or demianew@gmail.com to contact Emma Lee. Getting a message from you often is the little lift that helps to carry us onto the next challenge.
Another note is about the wonderful contact people who are helping us out. To help Emma Lee and I many people have volunteered to coordinate the ways people can help us out. Below is a list of the people who are being kind of a "lead" helper and if you would like to help they would love to hear from you.
In Pendleton:
Tom and Karen Demianew
45667 Best Rd
Pendleton, OR 97801
In Hermiston:
Ethan McDonald
ethan.mcdonald@hermiston.k12.or.us
&
Jessica Charleton
jessica.charleton@hermiston.k12.or.us
In Vancouver:
Patti Lundy
plundy@egreen.wednet.edu
I really am uncomfortable about asking for help. But I also am the kind of person that when I want to help somebody out I do not like not knowing what I can do to help or feeling like not being able to provide someting that is needed. So, I am trying to make it as open as possible for people to know how they can help and who to talk to. One of the biggest ways people can help is if you want to make a donation to help my family shoulder the costs of my treatments Patti and Ethan both have deposit slips to the account set up at Bank of America. They are the most wonderful people and I appreciate so much what they are doing to help me out. If you would like the account number just email me and I can send that to you or I can mail a slip if you would like. My mailing address is 704 SW 28th street, Pendleton, OR 97801
As you can imagine we are still in the early stages of my treatment and it will most likely get worse before I get better. I wish that I could take more time off to rest but my sick leave has been exhausted and I now take unpaid leave if something else doesn't work out. I am so thankful for the meals that have been provided for my family. It has been a BIG help to have all of the assistance with the meals. Evenings are so hard on Emma Lee and I and having a meal that is easy to get ready is a big plus.
As for all of you, thank you for your continued prayers and messages. It is so nice to open my email or mailbox and see a message from you. I hope you are all well and I look forward to posting again soon.
Chris
Monday, March 16, 2009
Suggestions for head coverings
One of the things I have noticed is how easily I get cold. I also know that there is a possibility that I may lose my hair so I decided to create a thread for suggestions of what kind of hat I should get. I have never been much of a hat wearer but I will need to find something.
So if you have ideas get them posted.
So if you have ideas get them posted.
Sunday, March 15, 2009
... ... continuing with the last post
The last post was pretty short but I have been having some early reactions to the chemo drugs. I have been having pretty rough flu like symptoms (sore joints, stiff neck, and jaw has been sore) and a pretty sore mouth and throat. These are known side effects they just do not usually set in so quickly.
I wanted to give my email address to all of the followers who may not have my email address. It is chris.demianew@gmail.com Also my mailing address is 704 SW 28th Street Pendleton OR 97801. These are some things that people have been asking for.
Once again Emma Lee want to thank you for helping us through this time. Thanks
Chris
I wanted to give my email address to all of the followers who may not have my email address. It is chris.demianew@gmail.com Also my mailing address is 704 SW 28th Street Pendleton OR 97801. These are some things that people have been asking for.
Once again Emma Lee want to thank you for helping us through this time. Thanks
Chris
One down ... ??? to go.
Chemo went ok yesterday. The treatment lasted for a little over six hours but some of that was a pre-treatment check up with the doctor. So when I was told the treatment could take seven hours I guess they were not too far off. I thought that all was going well and I was going to get out of the treatment center early when the first three chemo drugs went smoothly. They were a "push" drug which means that they are added to a saline drip through a syringe by the nurse. The drug that was bad news was the last one! It came in a bag that was twice the size of the saline drip bags. Almost immediatly after they started it I had a severe burning sensation in my arm where the the IV was hooked up. They changed it to a pump machine to try to slow it down and added more saline but that did not help much. Finialy they added lidocaine to the bag kept it on a real slow drip and I was able to manage the burning sensation. All I can say to try to communicate how the whole first treatment went is "wowah".
On to another subject, Patti Lundy has agreed to be the contact person at Heritage for the account number to make deposits at Bank of America to help Emma Lee and I pay for gas, medical bills, and other costs that we are facing as we treat my cancer. We really appreciate any assistance we can get and are very thankful for all of the help we have had so far. So if you would like to make a donation you can either email me and I will send you the account number or you can see Patti and make arrangments with her.
thank you again. I will post again soon. I am not feeling well right now and need to rest
On to another subject, Patti Lundy has agreed to be the contact person at Heritage for the account number to make deposits at Bank of America to help Emma Lee and I pay for gas, medical bills, and other costs that we are facing as we treat my cancer. We really appreciate any assistance we can get and are very thankful for all of the help we have had so far. So if you would like to make a donation you can either email me and I will send you the account number or you can see Patti and make arrangments with her.
thank you again. I will post again soon. I am not feeling well right now and need to rest
Thursday, March 12, 2009
Here we go.
Tomorrow will be the first chemo appointment. I was a bit surprised to find out that the treatment may take 7 hours to administer. I am taking a couple Family Handyman and Wood magazines, a book (Guns, Germs, and Steel by Jared Diamond) and a portable DVD player to keep busy. I hope I can stay mentally distracted. Em will be there right by my side so we may need to take a deck of cards. I hope she lets me win a couple games ;)
I received good news yesterday from my oncologist. My bone marrow test came back negative. That was very reassuring to me. That means at this time there is most likely only the tumors in my chest attached to the pericardium around my heart and to my phrenic nerve. The trick for me over the next several months is to stay as healthy as possible and to get as much rest as possible. This is going to be quite a challenge when I think about the fact that I have two young children who like to share everything with everybody and that I am a teacher at a large public high school but, I'll have to just be as careful as possible.
I also wanted you all to know that I got the account set up at Bank of America. I was told that some branches will allow a deposit if you just ask them to look up my account and say that it was opened at the Pendleton Oregon branch but most won't. They will want an account number. I am nervous about posting the account number on a blog that is open to everybody in the world, so I am going to have a person at Heritage High School have it and you can get it from them or you can email me at chris.demianew@gmail.com. I have not asked anybody yet at HHS to be that person but once I do, I will post the name of that contact person.
As I move into another difficult phase of this disease treatment, I welcome notes and messages to me and my family. This disease is not just about me. It is also about my two little girls who are and will continue to struggle to understand what is wrong with their daddy. It is about my wonderful and beautiful wife who carries a burden and worry about the care for her husband and children. For those of you who know Emma Lee, you recognize that Em is a very very private person. She has never been one who reached out for help and shared with people about her worries and needs. I ask that as you think about me and my issues that you also pray for strength and courage for my wife and children. To be completely open and honest about my greatest concerns is that they are for my family. It consumes me at times about whether their needs are going to be taken care of. While I will be the one who will look like hell on the outside, it is the invisible trauma inflicted on my daughters and wife I worry about going unnoticed.
So, thank you again for your continued support and concern for my health. I cherish all of my freinds and family and am very thankful for all of the good times, memories, and influence you have had on my life. I am who I am because of you all. I look forward to times we may get to share in the future.
Thank you again.
I look forward to posting again soon.
I received good news yesterday from my oncologist. My bone marrow test came back negative. That was very reassuring to me. That means at this time there is most likely only the tumors in my chest attached to the pericardium around my heart and to my phrenic nerve. The trick for me over the next several months is to stay as healthy as possible and to get as much rest as possible. This is going to be quite a challenge when I think about the fact that I have two young children who like to share everything with everybody and that I am a teacher at a large public high school but, I'll have to just be as careful as possible.
I also wanted you all to know that I got the account set up at Bank of America. I was told that some branches will allow a deposit if you just ask them to look up my account and say that it was opened at the Pendleton Oregon branch but most won't. They will want an account number. I am nervous about posting the account number on a blog that is open to everybody in the world, so I am going to have a person at Heritage High School have it and you can get it from them or you can email me at chris.demianew@gmail.com. I have not asked anybody yet at HHS to be that person but once I do, I will post the name of that contact person.
As I move into another difficult phase of this disease treatment, I welcome notes and messages to me and my family. This disease is not just about me. It is also about my two little girls who are and will continue to struggle to understand what is wrong with their daddy. It is about my wonderful and beautiful wife who carries a burden and worry about the care for her husband and children. For those of you who know Emma Lee, you recognize that Em is a very very private person. She has never been one who reached out for help and shared with people about her worries and needs. I ask that as you think about me and my issues that you also pray for strength and courage for my wife and children. To be completely open and honest about my greatest concerns is that they are for my family. It consumes me at times about whether their needs are going to be taken care of. While I will be the one who will look like hell on the outside, it is the invisible trauma inflicted on my daughters and wife I worry about going unnoticed.
So, thank you again for your continued support and concern for my health. I cherish all of my freinds and family and am very thankful for all of the good times, memories, and influence you have had on my life. I am who I am because of you all. I look forward to times we may get to share in the future.
Thank you again.
I look forward to posting again soon.
Monday, March 9, 2009
The Situation.
Hello friends,
Well, this is still a very hard thing for me to write about. But it has been very reassuring to me to have such a great group of friends and family reach out to help my family and I through this very difficult time. To give you all some background to my health I thought I would give you a recap as of today. I have been diagnosed with Hodgkin's Lymphoma stage II. Back on February 17th at Providence Portland Medical Center I had a large tumor (about the size of a softball) partially removed during a VATS procedure (Video Assisted Thoracic Surgery). I was in the cardiac intensive care unit for three days before being moved to a room on the respiratory floor for a short time and then going home. Since the surgery, I have been healing and learning more about my cancer, and having many tests and medical procedures done to prepare for my treatment.
As of today things are looking quite favorable. Last week I had a PET scan, respiratory function test, echo cardiogram, and a bone marrow test (ouch!!!). I do not know the results of the bone marrow test yet, but everything else did not reveal any new problems. I am starting chemo this Friday and I have a lot of anxiety. I am nervous about my own strength, the strength of my family, and the future, but I have an abundance of hope.
Many of my wonderful friends have asked how they can help since they are too far away to bring by a meal or help me get my garbage can to the curb (which is quite a task). To help provide an easy way to help us, my brother is helping me set up an account at Bank of America where people can make deposits to an account. This would be a great help to Emma Lee and I as we drive over 500 miles round trip for my PET scans, bone marrow tests, and chemo appointments, over 140 miles for my radiation appointments, and 120 miles for my other doctors appointments. It will also help because I have very little sick leave left. Moving from Washington to Oregon I was unable to transfer my large sum of sick days from Evergreen to Hermiston and the Hermiston School District does not allow for teachers to donate time*. I am getting amazing help from many freinds in the district but any additional help is certianly welcome.
You can also help by staying in contact. During the initial days of my diagnosis, I found myself in deep worry many times but was quickly reassured by an incomming email, card in the mail, and other gifts of notes, flowers, and well wishes and prayers. This is the biggest challenge I have ever faced. The one lesson I have learned is that I can not be my normal self; independent, self-reliant, and private. I need to reach out and ask for help if I am going to beat this disease. So thank you for you help, prayers, and well wishes. I will continue to post to this blog with updates and hope to continue to hear from you all.
Thank you and look forward to tomorrow.
Chris
Well, this is still a very hard thing for me to write about. But it has been very reassuring to me to have such a great group of friends and family reach out to help my family and I through this very difficult time. To give you all some background to my health I thought I would give you a recap as of today. I have been diagnosed with Hodgkin's Lymphoma stage II. Back on February 17th at Providence Portland Medical Center I had a large tumor (about the size of a softball) partially removed during a VATS procedure (Video Assisted Thoracic Surgery). I was in the cardiac intensive care unit for three days before being moved to a room on the respiratory floor for a short time and then going home. Since the surgery, I have been healing and learning more about my cancer, and having many tests and medical procedures done to prepare for my treatment.
As of today things are looking quite favorable. Last week I had a PET scan, respiratory function test, echo cardiogram, and a bone marrow test (ouch!!!). I do not know the results of the bone marrow test yet, but everything else did not reveal any new problems. I am starting chemo this Friday and I have a lot of anxiety. I am nervous about my own strength, the strength of my family, and the future, but I have an abundance of hope.
Many of my wonderful friends have asked how they can help since they are too far away to bring by a meal or help me get my garbage can to the curb (which is quite a task). To help provide an easy way to help us, my brother is helping me set up an account at Bank of America where people can make deposits to an account. This would be a great help to Emma Lee and I as we drive over 500 miles round trip for my PET scans, bone marrow tests, and chemo appointments, over 140 miles for my radiation appointments, and 120 miles for my other doctors appointments. It will also help because I have very little sick leave left. Moving from Washington to Oregon I was unable to transfer my large sum of sick days from Evergreen to Hermiston and the Hermiston School District does not allow for teachers to donate time*. I am getting amazing help from many freinds in the district but any additional help is certianly welcome.
You can also help by staying in contact. During the initial days of my diagnosis, I found myself in deep worry many times but was quickly reassured by an incomming email, card in the mail, and other gifts of notes, flowers, and well wishes and prayers. This is the biggest challenge I have ever faced. The one lesson I have learned is that I can not be my normal self; independent, self-reliant, and private. I need to reach out and ask for help if I am going to beat this disease. So thank you for you help, prayers, and well wishes. I will continue to post to this blog with updates and hope to continue to hear from you all.
Thank you and look forward to tomorrow.
Chris
I have decided to use this website as a means for keeping in contact with all of you and while giving you a place to get the latest information on my road to health. My road is long from over and I look forward to the wonderful blessings that I get to have every day ahead of me. Look forward to hearing from you all.
Chris
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