Chapter 19 March 2004, My 48th Birthday
March 2, 2004, today is my 48th birthday! Let's hope there are many more of these in the future. My hair is about an inch long so I decide to lose the scarf. My appreciation for this moment flows though me like a white light of energy. It brings me a physical reaction of a smile coupled with a light spring in my step. Birthday celebrations are important, especially in light of my current health situation. My gift to me today is a small shopping spree, small because I'm so cheap, but I let go of the purse strings just enough to purchase a few items to update my wardrobe for my new, healthier look. In my younger days I was an absolute slave to style. Now that I have children, their fashion needs are more fun to feed.
Today however is all about me, I can't believe I'm saying that, but it is true. I'm going to do something that will bring me frivolous fun. I decide to dote on myself rather than everyone else for a change. I need to rejuvenate and lift myself up.
When I was going through chemo I would visualize myself as a healthy, strong, fit and fabulous woman walking tall. Now, I feel that I am here in my new, more fashionable clothes. Visualization has been extremely important to me in realizing my goals and dreams when it comes to my illness. I picture myself healthy and happy doing something in the future, whether it be tomorrow or 5 to 10 years from now. Remember, your thoughts are precursors to your actions. Think big. Visualization not only gives me a daydream like escape but also hope that I can survive. Continually believe in the power of your mind. Positive thoughts, along with positive images and beliefs help in how I deal with being sick. I much prefer holding onto the belief that something inspiring is going to happen with this illness rather than something negative.
Today I can honestly say that, terminal illness and all, my life is good, my life is great! The tumors are still present but they have been mentally pushed back to the recesses of my mind while I enjoy this moment of being 48 years old. When I woke up I started my day by saying; thanks for letting me wake up in this nice, warm bed. Thanks for my home, my family, the food in my cupboards and refrigerator. I have been truly blessed. Count your good fortunes, because there are many. Instead concentrating on my illness I concentrate on all that I have to be grateful for.
Life's upsets happen to us for a reason. Our difficult situations end up bringing the most growth and possibly the most joy. I would not wish my situation on anyone, but I would also not wish that they never had to deal with adversity. Adversity is what brings us our strength and helps us grow. It shows us what we are made of. Let your own tragedies lead you into a more positive, uplifting light.
Today is April 1, 2004, I continue to feel healthy. My tumors are stable. People can't believe that I have a stage four cancer. It's amazing, but it seems as though the common cold can take you down faster than cancer. When you have cancer and you are not going through chemo you don't necessarily feel or look sick. Your energy level may be less than normal, but it's the cure of chemo that drags you down. There is a precarious balance between giving you enough chemo to kill the bad cells without killing all of the good ones.
Currently I am in my last semester of school and working at a gym teaching strength and conditioning classes. At 48 and full of cancer I am in better shape than many of my class participants. Exercise has become an important factor in helping me cope with my illness. Exercising puts you in a better mood. It helps increase your energy level and strength which helps you get through physically difficult times. Exercise also makes you stronger mentally. Pushing yourself to exercise, especially when you don't want to, gives you the mental courage to accomplish even more difficult tasks.
I am one of those people who likes exercise. Not all the time, there are many times that I don't want to take the time to exercise and I have to force myself to do so, but I always feel better after I do it. Keeping the end result in mind, like a healthier, better looking body helps with adherence. As a kid I was athletic. And it came easy to me. Gym was one of my favorite subjects. Academically I didn't shine, but athletically I did. Gym was an easy A.
Since high school I've remained intermittently physically active. While in school I was a gymnast and a cheerleader which increased my appetite. After high school I kept the appetite but stopped the activity. This was a mistake. My 5'4" frame amassed an excess of 150 lbs, which made me miserable. Unable to afford the continual rotation of increasingly larger sizes, coupled with the last draw remark my older brother Brendan made about me resembling a linebacker for the Green Bay Packers, I decided to change my eating and exercise habits.
My roommate and I went on a strict diet. We ate healthy foods, counted our calories and made a big production out of our meals. The table was set each evening with china and wine classes filled with lemon water. At the time we lived in Minneapolis near three beautiful lakes in the city. We walked every summer evening around Lake Harriet which was 2 to 3 miles. Our exercise and social needs were all met at the same time because there was an abundance of cute guys running, skating, biking or walking as well. We met a few prospects, lost some weight and best of all, gained an appreciation for exercise and healthier eating habits.
I kept exercising on and off throughout my life, stopping and starting during pregnancies and child rearing. When I was about to turn forty I decided to train for a 10K in honor of my brother in law Chuck who I spoke of earlier, passing away at age 38 from lung cancer. Getting in shape for the race wasn't easy but I was highly motivated, soon after the race I started to slack off and not exercise. It was just 6 months later when my troubled brother Kevin, also 38, passed away from an obesity related disease.
Experiencing the death of a loved one can transform your life. I wanted their deaths to mean something. A positive change was in order for my life to honor them. This is when I decided to look at exercise as a ritual, like brushing my teeth. How many people go three months without brushing their teeth? That would be gross wouldn't it? The body needs to be maintained with exercise just as badly as your teeth need to stay healthy by being brushed. This thinking was not only the catalyst for me to stay active, but to go back to school as well. My new career goal was to teach people to exercise, help them learn to love it and treat it as a fun activity rather than something they dread.
Advice
Get involved in your own happiness. It's all up to you.
Learn to dote on yourself. You deserve pampering
Start your day with positive affirmations. It will set you in the right frame of mind.
Visualize the future in a positive light.
Exercise, your body desperately needs it.
Monday, January 31, 2011
Sunday, January 30, 2011
Chapter 18 January 2004, The Oil and Protein Diet
Chapter 18 January 2004, The Oil and Protein Diet
It's New Years Eve 2003, soon to be 2004. I am at home with my husband and daughters, ready for a new year to begin. It has been six month since my diagnosis. As I look back, it has been a difficult time, but it has also flown by. My friend Bonnie from down the block has been bugging me since my diagnosis to do this eating regimen called The Oil and Protein Diet by Dr. Johanna Budwig. Western medicine is not offering me much hope. I want to try a holistic approach along with the Femara to hopefully improve my chances for a longer life. This is the time to start it. I muster up the courage to commit to it. It is a strict diet, but I have decided to give it a shot.
Dr. Budwig's theory is "When you use highly unsaturated essential fatty acids (like those found in flax oil), and combine them with high quality protein, (which makes essential fats easily soluble in the body), it will counteract toxic and poisonous accumulations in all tissue. Basically the diet is good for many types of ailments. She believes that the bad oils and preserved foods that we consume create toxic and poisonous accumulations in our bodies which lead to disease.
My friend and I make the mix recipe together for the first time because the book is translated from German and the foods are called by different names. For example, quark is cottage cheese and Linomel is a muesli type cereal. Bonnie is kind enough to bring all the ingredients to my home to teach me how to make the mix which is an essential part of the diet.
First, we combine one cup of organic cottage cheese with three tablespoons of flax oil. Then, we add one teaspoon of vanilla and one tablespoon of organic honey. To that you add two tablespoons of ground flax seed, three tablespoons of sugar free muesli, 1/4 cup of organic raisins, 1/4 cup of organic raw walnuts and 1/4 cup of organic raw almonds. Then you add about 1/2 cup each of organic fresh or frozen fruits such as bananas, strawberries, grapes, cherries, blueberries, etc. You can add any type of fruit that you like. It doesn't have to be the above choices, but, they should be organic. This recipe may not sound appetizing, but it is actually delicious, filling and extremely satisfying. You can't taste the cottage cheese or the honey; it's almost like a cake batter. Once I started eating it, I got addicted. You eat this mix everyday for breakfast and lunch. For dinner, you may have salad made up of organic greens, nuts and flax oil dressing. The dressing is made up of flax oil, milk and mustard for flavor. This is actually very good as well.
You may eat any type of organic vegetables, and you can eventually add fish or organic chicken. No red meat. There is an entire cookbook, but I am too overwhelmed to cook separately for myself and then again for my family. If I am going to be successful at this I need to make it as simple as possible. Basically I eat the same thing every single day. It sounds boring, but this is all I can handle right now. Some days I eat a baked potato with melted parmesan cheese along with fish or poultry for dinner, and my dessert typically consists of God's dessert, an orange. My diet may vary just a tad from what the book suggests, but I do what I think I can. If I can't find organic fruit I use regular, but one should use organic.
As 2004 starts, the cancer diet is working for me. The mix addresses my sweet cravings. The honey sweetens everything and is better than processed sugar. Everything I've read indicates that sugar is bad for you. It is supposed to increase blood insulin levels and depress the immune system, which is what fights disease. It is also supposed to cause liver cells to divide and increase in size. I've never had a Doctor tell me that sugar is bad for cancer, but I've sure read many negative things about it. The problem is I love sugar! It has always been a constant in my diet. Sugar is addictive and I'm addicted to it. At least a quarter of my diet comes from sugar. I'm not sure why I like it so much, perhaps it is because we didn't get a lot of sugar growing up. Halloween was the time to eat sugar at our house. We filled our bags as full as possible and tried to eat it all in one night.
My Mom's parents were both obese. Her 8th grade teacher told her that this would be her fate as well, but she would prove her wrong. Ruth O'Brien is not one to be told how her future will present itself, especially if it is in a negative light. Thank God I got some of my determination from her. One of the many reasons I am so mentally strong.
Advice:
If you are not offered much hope through conventional medicine, keep trying new, holistic measures. What can it hurt?
Think about the things that you put into your body. Are they good for you? Try to slowly rid yourself of bad habits.
It's New Years Eve 2003, soon to be 2004. I am at home with my husband and daughters, ready for a new year to begin. It has been six month since my diagnosis. As I look back, it has been a difficult time, but it has also flown by. My friend Bonnie from down the block has been bugging me since my diagnosis to do this eating regimen called The Oil and Protein Diet by Dr. Johanna Budwig. Western medicine is not offering me much hope. I want to try a holistic approach along with the Femara to hopefully improve my chances for a longer life. This is the time to start it. I muster up the courage to commit to it. It is a strict diet, but I have decided to give it a shot.
Dr. Budwig's theory is "When you use highly unsaturated essential fatty acids (like those found in flax oil), and combine them with high quality protein, (which makes essential fats easily soluble in the body), it will counteract toxic and poisonous accumulations in all tissue. Basically the diet is good for many types of ailments. She believes that the bad oils and preserved foods that we consume create toxic and poisonous accumulations in our bodies which lead to disease.
My friend and I make the mix recipe together for the first time because the book is translated from German and the foods are called by different names. For example, quark is cottage cheese and Linomel is a muesli type cereal. Bonnie is kind enough to bring all the ingredients to my home to teach me how to make the mix which is an essential part of the diet.
First, we combine one cup of organic cottage cheese with three tablespoons of flax oil. Then, we add one teaspoon of vanilla and one tablespoon of organic honey. To that you add two tablespoons of ground flax seed, three tablespoons of sugar free muesli, 1/4 cup of organic raisins, 1/4 cup of organic raw walnuts and 1/4 cup of organic raw almonds. Then you add about 1/2 cup each of organic fresh or frozen fruits such as bananas, strawberries, grapes, cherries, blueberries, etc. You can add any type of fruit that you like. It doesn't have to be the above choices, but, they should be organic. This recipe may not sound appetizing, but it is actually delicious, filling and extremely satisfying. You can't taste the cottage cheese or the honey; it's almost like a cake batter. Once I started eating it, I got addicted. You eat this mix everyday for breakfast and lunch. For dinner, you may have salad made up of organic greens, nuts and flax oil dressing. The dressing is made up of flax oil, milk and mustard for flavor. This is actually very good as well.
You may eat any type of organic vegetables, and you can eventually add fish or organic chicken. No red meat. There is an entire cookbook, but I am too overwhelmed to cook separately for myself and then again for my family. If I am going to be successful at this I need to make it as simple as possible. Basically I eat the same thing every single day. It sounds boring, but this is all I can handle right now. Some days I eat a baked potato with melted parmesan cheese along with fish or poultry for dinner, and my dessert typically consists of God's dessert, an orange. My diet may vary just a tad from what the book suggests, but I do what I think I can. If I can't find organic fruit I use regular, but one should use organic.
As 2004 starts, the cancer diet is working for me. The mix addresses my sweet cravings. The honey sweetens everything and is better than processed sugar. Everything I've read indicates that sugar is bad for you. It is supposed to increase blood insulin levels and depress the immune system, which is what fights disease. It is also supposed to cause liver cells to divide and increase in size. I've never had a Doctor tell me that sugar is bad for cancer, but I've sure read many negative things about it. The problem is I love sugar! It has always been a constant in my diet. Sugar is addictive and I'm addicted to it. At least a quarter of my diet comes from sugar. I'm not sure why I like it so much, perhaps it is because we didn't get a lot of sugar growing up. Halloween was the time to eat sugar at our house. We filled our bags as full as possible and tried to eat it all in one night.
My Mom's parents were both obese. Her 8th grade teacher told her that this would be her fate as well, but she would prove her wrong. Ruth O'Brien is not one to be told how her future will present itself, especially if it is in a negative light. Thank God I got some of my determination from her. One of the many reasons I am so mentally strong.
Advice:
If you are not offered much hope through conventional medicine, keep trying new, holistic measures. What can it hurt?
Think about the things that you put into your body. Are they good for you? Try to slowly rid yourself of bad habits.
Thursday, January 27, 2011
Capter 17 Christmas 2003 in Minnesota
Chapter 17 Christmas 2003 in Minnesota
Mike, the girls, and I are traveling to Minnesota to celebrate the Christmas holiday with my family. It has been several years since we've been home for Christmas so we are looking forward to the trip. Albert Lea is the name of the town I grew up in. The population is around 18,000 and there is not much to do at the height of winter, besides skating, skiing or sledding. We do manage to make it up to the Mall of America to do a little last minute Christmas shopping. This mall boasts an indoor amusement park along with the many stores so it is easy to spend a warm day in the middle of the coldest season of the year. As always we meet up with my other siblings and their families for a day of Christmas shopping and amusement park fun.
Christmas Eve was upon us, this year will be especially nice because my oldest brother Brendan, not so recently divorced and his son Mike make the long trip from San Francisco to be with us. Brendan's other two children Christine and Amy were unable join us. I have not seen Michael since he was a young boy. The circumstances motivating their visit, my health, are sad, but seeing them both makes me happy. Brendan has lived in San Francisco for the last twenty years. He runs his own landscaping business and can never get away, so consequently, he and his family have missed our summer family reunions in Minnesota Brendan has always been special to me. He is the first born, the prodigal son, in high school he was a great at everything, straight A student, accomplished track and cross country star and a bit of a ladies man. I believe he still holds the record at our high school for the mile run, set in 1968. I've always admired him. College life in the late 60's opened his eyes to a different way of thinking and living. He joined a Commune, so to speak, and left everything behind for the hippie lifestyle in Northern California. Brendan is a gentle, kind soul who plods away at his work without complaint and I respect him for that.
When we first see Mike he seems a bit shy, the O'Brien's are an overwhelming group. He is a handsome kid, a good mix of his mother and father. His eyes are big and wide taking all the O'Brien family antics in. There is laughter and bickering and political conversations going on. When we are all home in my parent's house there is chatter all around. You don't know which conversation to dip into next.
That night we went to Midnight Mass. My dad is the choir director at the church and my mom sings in the choir. My feelings about the church were mixed. This was the church where I made my First Communion and Confirmation; it was also the church where my younger brother's funeral was held. Memories flooded my mind as I walked in.
St. Theodore's is also the church where my siblings and I would spill into muffled laughter during sermons. Tonight was no exception, even though we are all adults. My sister Paddy, who hasn't been to church in years, went to Communion and as the priest lifted the host to her she took it out of his hand. Generally you wait for the priest to put the host in your mouth or your hand. He looked a little shocked when Paddy grabbed it from him. Paddy is my highly successful, older sister, by three years. She made the trip with her daughter Samantha, her husband David and Step daughter Sarah have stayed home. Paddy is a Radio Sales Representative in Los Angeles and could sell boats in the desert. When she was little, she was going door to door selling Girl Scout cookies, upon reaching a neighbors house ready to knock, the door flew open as a woman flew out in excitement yelling, "Your Mom just had her baby," Paddy's response was, "My Mom 's always having babies, you wanna buy some cookies?"
Paddy's antics may have set the tone for our chuckling, but the animated priest brought it home. As he makes the sign of the cross, his arms fully extend and he completely exaggerates, pointing to the north, south, east and west, as he yells out, in the name of the Father, Son and Holy Ghost, this made us laugh under our breath even more. During the sermon he would pause and turn his head slightly upward like he was listening intently to someone, and then he would look back at the parishioners with great enthusiasm and delve back into his story. Need I spell it out? This behavior brought around many smiles to the badly behaved O'Brien's in the first three rows at church. You'd never know we were all in our forties and fifties. The light laughter mixed with love and warmth carried through the entire service.
After mass we said hello to a few familiar faces. Everyone knew about my condition; word travels fast in a small town. They were all praying for me. There was no shortage of tears and hugs. It was nice. I saw a grade school friend, Jim Hockinson, a boy I bit in the arm and held on like a dog with a bone after being called flatso one too many times. I was teased relentlessly about my 28 A bra size in the 6th grade. He never teased me again after that incident, or let me forget it.
Afterwards we went home for a Christmas Eve celebration filled with good food, cocktails, and as always, a dose of controversy. My nephew Mike was surrounded by family members he had not met or couldn't remember. His big eyes roamed the crowd. All of his cousins were interested in getting to know him so for the remainder of the evening he was peppered with questions and conversations. It did my heart good to see him bonding with his relatives after all these years.
Christmas day was a typical O'Brien get together. Most of us were home. We missed my brother Brian and his family, Maureen and John's children and my sister Alice. Brian is a great guy. We love having him at family events because he is a wonderful cook and a fun, loving guy. He, his second wife Rhonda and his kids, Heather, Joe and Ryan stayed in Denver for the Holiday. My sister Alice and her life mate, Martin, live in Iowa. They prefer quiet Christmases so they stay in Iowa, but are always home for Thanksgiving. Maureen's children Tony who lives in Colorado and Angie and her family who live in Arizona were also unable to make it home.
The morning was busy with food preparation. First there was coffee, breakfast and conversation, nothing about my illness, just light talk. That was followed up by dinner preparation. My Mom started making her usual 22lb turkey early in the morning.
Opening Christmas gifts is an early ritual because the kids are too anxious to wait. At the O'Brien house we move slowly around the room watching one person at a time open their gifts so the moment and statements can be cherished.
Dinner is served after all the morning and afternoon hustle bustle. We set up a buffet style for the big crowd, Dad quiets us all down, which isn't easy so he usually gets a little testy and then he thanks God for all of us getting there safely, this year he adds a special prayer for me and my health which brings tears to a few eyes and finally we eat.
When you have twenty or more family members together in a small space for an extended period of time, with or without alcohol, there is bound to be drama. There has never been an O'Brien function without it. Dad, or another family member makes a comment that offends someone, not on purpose, but it happens then feelings are hurt and an argument ensues. Two of my sisters lightly bicker about who was doing more cleaning up after dinner. Some people in my family sit around and relax after dinner and others have to get up clean right away. Disagreements arise because of this. There is rarely a dull or quiet moment at the O'Brien's.
On such holidays, it is good to see everyone and good to go home. We left the day after Christmas. Everyone stopped at Mom and Dad's for breakfast and goodbyes. The mood was quiet and loving. Eyes glistened with tears. We all hugged one another a little tighter. Hugs for Mom and Dad were a little tighter than usual to assure them I was strong and ready to fight. Gone were the memories of any squabbling from the day before. My girls, fond of their new found friendship with their cousin Mike, made him promise to stay in touch. Mike told Alex he'd be around to take her out for her 1st drink at 21.
On our way home we made a brief stop in Chicago, the town where our two older daughters were born. It's also the town where two of my best friends, Jeanne Rivard and Della Garcia, godmothers' to my daughters, live. I met Jeanne about a year after I moved to Chicago. We worked for a crazy guy named Paul Stuck, he was the owner Recycled Furniture. The man spent most of his time ranting and raving or calculating ways to screw people. It was an interesting job. Jeanne and I became fast friends in 1984 and have remained so ever since.
1984 was also my first encounter with Della, but it was just over the phone. She was forced by her boss to buy some furniture from us, she was not happy about it and she wasn't afraid to tell us. When she called our company we would all yell "It's Della!" I was afraid of her because she came across as an angry woman over the phone. Della was an absolute perfectionist but Paul Stuck's Recycled Furniture was not. Little did I know, Mike Wetzel, my future husband whom I had not met yet, also an absolute perfectionist was the person who sold Della and her company all of their brand new, nice furniture. It was a huge account for Mike and he and Della had a good working relationship, hence the anger spewing from her voice every time she called.
It wasn't until a year later that I met Della in person through none other than Mike Wetzel. I met them both at the same time. I was working at a different company, one that cleaned office furniture. Mike had called about a client that had some smoke damage to their office furniture and needed our services.
Della's company was the client, and I was scared to death to meet her! I met Mike first, in the lobby of Della's building, he was cute and I could tell he thought I was cute. This made me a little less nervous. Once we sat down with Della and I met her big, brown, warm eyes with mine I could see that she was a puppy dog and not the angry bear I had once witnessed over the phone. We eventually became great friends. Mike and I started dating a few weeks later as well.
Della and Jeanne have been in our lives sharing all of our ups and downs. They were at our wedding our special occasions, the birth of our daughters, birthdays, and anniversaries. I was hospitalized three months after Alex was born with a kidney infection. Jeanne came to the hospital with Mike while Della took care of Alex. Not only did Alex scream the whole night, but Della came outside to find her car stolen. Jeanne and Della have always been there for me.
Mike and I spent many good years in Chicago and made many friends. We did not have time to see all of the people we love and care about, but we did stop to see Della and Jeanne. They are like family to us and we don't see them often enough. They are devastated by my illness and again offer whatever we may need in the form of love and help. I assure them as well that I'm ready for a fight.
Advice
Make time to share special occasions with family you don't see often.
Make it a priority to see old friends, their love and support will motivate you.
Let your kids or loved one's see how important relationships are.
Share fun times with your family when your sick so they see that life goes on even in, or especially in difficult situatons
Mike, the girls, and I are traveling to Minnesota to celebrate the Christmas holiday with my family. It has been several years since we've been home for Christmas so we are looking forward to the trip. Albert Lea is the name of the town I grew up in. The population is around 18,000 and there is not much to do at the height of winter, besides skating, skiing or sledding. We do manage to make it up to the Mall of America to do a little last minute Christmas shopping. This mall boasts an indoor amusement park along with the many stores so it is easy to spend a warm day in the middle of the coldest season of the year. As always we meet up with my other siblings and their families for a day of Christmas shopping and amusement park fun.
Christmas Eve was upon us, this year will be especially nice because my oldest brother Brendan, not so recently divorced and his son Mike make the long trip from San Francisco to be with us. Brendan's other two children Christine and Amy were unable join us. I have not seen Michael since he was a young boy. The circumstances motivating their visit, my health, are sad, but seeing them both makes me happy. Brendan has lived in San Francisco for the last twenty years. He runs his own landscaping business and can never get away, so consequently, he and his family have missed our summer family reunions in Minnesota Brendan has always been special to me. He is the first born, the prodigal son, in high school he was a great at everything, straight A student, accomplished track and cross country star and a bit of a ladies man. I believe he still holds the record at our high school for the mile run, set in 1968. I've always admired him. College life in the late 60's opened his eyes to a different way of thinking and living. He joined a Commune, so to speak, and left everything behind for the hippie lifestyle in Northern California. Brendan is a gentle, kind soul who plods away at his work without complaint and I respect him for that.
When we first see Mike he seems a bit shy, the O'Brien's are an overwhelming group. He is a handsome kid, a good mix of his mother and father. His eyes are big and wide taking all the O'Brien family antics in. There is laughter and bickering and political conversations going on. When we are all home in my parent's house there is chatter all around. You don't know which conversation to dip into next.
That night we went to Midnight Mass. My dad is the choir director at the church and my mom sings in the choir. My feelings about the church were mixed. This was the church where I made my First Communion and Confirmation; it was also the church where my younger brother's funeral was held. Memories flooded my mind as I walked in.
St. Theodore's is also the church where my siblings and I would spill into muffled laughter during sermons. Tonight was no exception, even though we are all adults. My sister Paddy, who hasn't been to church in years, went to Communion and as the priest lifted the host to her she took it out of his hand. Generally you wait for the priest to put the host in your mouth or your hand. He looked a little shocked when Paddy grabbed it from him. Paddy is my highly successful, older sister, by three years. She made the trip with her daughter Samantha, her husband David and Step daughter Sarah have stayed home. Paddy is a Radio Sales Representative in Los Angeles and could sell boats in the desert. When she was little, she was going door to door selling Girl Scout cookies, upon reaching a neighbors house ready to knock, the door flew open as a woman flew out in excitement yelling, "Your Mom just had her baby," Paddy's response was, "My Mom 's always having babies, you wanna buy some cookies?"
Paddy's antics may have set the tone for our chuckling, but the animated priest brought it home. As he makes the sign of the cross, his arms fully extend and he completely exaggerates, pointing to the north, south, east and west, as he yells out, in the name of the Father, Son and Holy Ghost, this made us laugh under our breath even more. During the sermon he would pause and turn his head slightly upward like he was listening intently to someone, and then he would look back at the parishioners with great enthusiasm and delve back into his story. Need I spell it out? This behavior brought around many smiles to the badly behaved O'Brien's in the first three rows at church. You'd never know we were all in our forties and fifties. The light laughter mixed with love and warmth carried through the entire service.
After mass we said hello to a few familiar faces. Everyone knew about my condition; word travels fast in a small town. They were all praying for me. There was no shortage of tears and hugs. It was nice. I saw a grade school friend, Jim Hockinson, a boy I bit in the arm and held on like a dog with a bone after being called flatso one too many times. I was teased relentlessly about my 28 A bra size in the 6th grade. He never teased me again after that incident, or let me forget it.
Afterwards we went home for a Christmas Eve celebration filled with good food, cocktails, and as always, a dose of controversy. My nephew Mike was surrounded by family members he had not met or couldn't remember. His big eyes roamed the crowd. All of his cousins were interested in getting to know him so for the remainder of the evening he was peppered with questions and conversations. It did my heart good to see him bonding with his relatives after all these years.
Christmas day was a typical O'Brien get together. Most of us were home. We missed my brother Brian and his family, Maureen and John's children and my sister Alice. Brian is a great guy. We love having him at family events because he is a wonderful cook and a fun, loving guy. He, his second wife Rhonda and his kids, Heather, Joe and Ryan stayed in Denver for the Holiday. My sister Alice and her life mate, Martin, live in Iowa. They prefer quiet Christmases so they stay in Iowa, but are always home for Thanksgiving. Maureen's children Tony who lives in Colorado and Angie and her family who live in Arizona were also unable to make it home.
The morning was busy with food preparation. First there was coffee, breakfast and conversation, nothing about my illness, just light talk. That was followed up by dinner preparation. My Mom started making her usual 22lb turkey early in the morning.
Opening Christmas gifts is an early ritual because the kids are too anxious to wait. At the O'Brien house we move slowly around the room watching one person at a time open their gifts so the moment and statements can be cherished.
Dinner is served after all the morning and afternoon hustle bustle. We set up a buffet style for the big crowd, Dad quiets us all down, which isn't easy so he usually gets a little testy and then he thanks God for all of us getting there safely, this year he adds a special prayer for me and my health which brings tears to a few eyes and finally we eat.
When you have twenty or more family members together in a small space for an extended period of time, with or without alcohol, there is bound to be drama. There has never been an O'Brien function without it. Dad, or another family member makes a comment that offends someone, not on purpose, but it happens then feelings are hurt and an argument ensues. Two of my sisters lightly bicker about who was doing more cleaning up after dinner. Some people in my family sit around and relax after dinner and others have to get up clean right away. Disagreements arise because of this. There is rarely a dull or quiet moment at the O'Brien's.
On such holidays, it is good to see everyone and good to go home. We left the day after Christmas. Everyone stopped at Mom and Dad's for breakfast and goodbyes. The mood was quiet and loving. Eyes glistened with tears. We all hugged one another a little tighter. Hugs for Mom and Dad were a little tighter than usual to assure them I was strong and ready to fight. Gone were the memories of any squabbling from the day before. My girls, fond of their new found friendship with their cousin Mike, made him promise to stay in touch. Mike told Alex he'd be around to take her out for her 1st drink at 21.
On our way home we made a brief stop in Chicago, the town where our two older daughters were born. It's also the town where two of my best friends, Jeanne Rivard and Della Garcia, godmothers' to my daughters, live. I met Jeanne about a year after I moved to Chicago. We worked for a crazy guy named Paul Stuck, he was the owner Recycled Furniture. The man spent most of his time ranting and raving or calculating ways to screw people. It was an interesting job. Jeanne and I became fast friends in 1984 and have remained so ever since.
1984 was also my first encounter with Della, but it was just over the phone. She was forced by her boss to buy some furniture from us, she was not happy about it and she wasn't afraid to tell us. When she called our company we would all yell "It's Della!" I was afraid of her because she came across as an angry woman over the phone. Della was an absolute perfectionist but Paul Stuck's Recycled Furniture was not. Little did I know, Mike Wetzel, my future husband whom I had not met yet, also an absolute perfectionist was the person who sold Della and her company all of their brand new, nice furniture. It was a huge account for Mike and he and Della had a good working relationship, hence the anger spewing from her voice every time she called.
It wasn't until a year later that I met Della in person through none other than Mike Wetzel. I met them both at the same time. I was working at a different company, one that cleaned office furniture. Mike had called about a client that had some smoke damage to their office furniture and needed our services.
Della's company was the client, and I was scared to death to meet her! I met Mike first, in the lobby of Della's building, he was cute and I could tell he thought I was cute. This made me a little less nervous. Once we sat down with Della and I met her big, brown, warm eyes with mine I could see that she was a puppy dog and not the angry bear I had once witnessed over the phone. We eventually became great friends. Mike and I started dating a few weeks later as well.
Della and Jeanne have been in our lives sharing all of our ups and downs. They were at our wedding our special occasions, the birth of our daughters, birthdays, and anniversaries. I was hospitalized three months after Alex was born with a kidney infection. Jeanne came to the hospital with Mike while Della took care of Alex. Not only did Alex scream the whole night, but Della came outside to find her car stolen. Jeanne and Della have always been there for me.
Mike and I spent many good years in Chicago and made many friends. We did not have time to see all of the people we love and care about, but we did stop to see Della and Jeanne. They are like family to us and we don't see them often enough. They are devastated by my illness and again offer whatever we may need in the form of love and help. I assure them as well that I'm ready for a fight.
Advice
Make time to share special occasions with family you don't see often.
Make it a priority to see old friends, their love and support will motivate you.
Let your kids or loved one's see how important relationships are.
Share fun times with your family when your sick so they see that life goes on even in, or especially in difficult situatons
Tuesday, January 25, 2011
Chapter 16 - Going Off Chemo - October 2003
Chapter 16 - Going off Chemo, October 2003
By October 2003 the chemo side effects are getting to be too much for me to handle. Frustration is settling in, I am exhausted most of the time; this, coupled with all of the other negative side effects is wearing me down physically. Emotionally I still feel brave and I continually pray to God for help in holding on. There are so many people close to my heart struggling, so I try to keep my own feelings at bay.
Being strong for my supporters is almost a selfish act for me. When I am strong, they are strong. My mental tenacity is empowered by knowing I am setting an example for everyone. My strength comes out in subtle ways; first of all I have not crumbled up into a ball and wallowed in self pity, maybe because I am too frightened to do so for fear of what would happen if I did. If I react with fear or panic would this illness take a hold of me and swallow me up?
On the day of and the day following chemo I lay around more, this makes the kids and Mike panic a little. I continue to explain to everyone that it is the chemo and not the cancer that is making me sick. Other than chemo days I get out of bed early, before everyone else to perform my daily ritual of drinking tea and having a conversation with God in my living room or on my deck, or even standing in the woods behind my house. I make breakfast, lunch, and dinner for my family like clockwork.
My strength manifests itself by being a participant in my ordinary, everyday life. If I get depressed, I work hard at lifting myself up by thinking of all the good that I have in my life, I don't stay in bed all day long. I just march along like a little soldier. And believe me, on some days that alone, takes strength, but, you push yourself and push yourself and then one day you realize you don't have to push so hard. However, I reiterate, it is becoming increasingly more difficult to be a rock in the light of these side effects. I pray to find some other source of power. I need to find something for me. Day after day I put one foot in front of the other and trudge on. When I go to bed, my new and most favorite time of day, I pray for strength and a break until I fall asleep. Just when my situation seems to be the darkest, a little ray of light appears and I can feel hope streaming through. My tumors in the liver have shrunk a bit and have stabilized. Because of this, as well as, the doctor's concern that some of the side effects, like the neuropathy, the numbness in the hands and feet, might become permanent, the oncologist decides to take me off chemo and put me on a hormone therapy. How do ya like me now? Is all I have to say to myself. This is right up there with any of the great joys I have experienced in my life.
Femara is an oral chemotherapy drug which doesn't allow an enzyme called aromatase to convert androgens into estrogen. My cancer is estrogen receptor positive which means it is fed by estrogen. Without estrogen present the tumor can't grow and will hopefully shrink. The side effects for me are nothing. My hair has started to grow back. I don't have any bone or joint pain, nausea or hot flashes like some woman do with this drug.
I am thrilled. Thanksgiving is just around the corner and I am looking forward to actually tasting those wonderful foods like; turkey, dressing, mashed potatoes, green bean casserole and pumpkin pie, my absolute favorite dishes. Suddenly I have so much more to be thankful for.
If the hormone therapy works, the doctor tells me, I can stay on it indefinitely. The longest anyone, with my diagnosis, has survived on Femara is five years. I hope to break that record. My immediate goal for survival is nine years-- that will put the kids through high school-- but I'm working on short term goals right now; like surviving on a daily basis and then monthly basis. When I reach a goal, I set another and keep on going. Who knows? I might be here to see my children make their own lives; graduate high school, college, have careers and eventually families of their own.
When you're fighting for your life, it's important to have goals. Write them down, and look at them every day. Visualize yourself being healthy. This just helps keep you on track, once you've written a goal down you've made a commitment, keep it in a place where you'll see it every day reminding you of what you are trying to achieve. "If you can see it and believe it you can achieve it."
By mid-November, my hair has covered my head like a scruffy, short beard. I still wear a rag on my head, something I'll do until it gets to an acceptable length. The first time I went through chemo I took the scarf off as soon as I had a little growth covering my entire head, this garnered some very shocked looks from people. I was at my daughters' school picking them up. Upon walking into Katie's classroom I was welcomed with surprised looks. This was not just from the kids but adults as well. Their stares made me feel uncomfortable, but there was one little boy with red hair and glasses from Frankie's first grade class that walked past me, pointed and yelled out, "Nice haircut Mrs. Wetzel." (All the kids call me Mrs. Wetzel because it's my husband and daughter's last name, I kept my maiden name, O'Brien) leave it to a little kid to make everything better. I love that kid, he made me smile.
My eyes and nails are clearing up. I am beaming. You can't imagine how fortunate I feel to have normal nails and eyes that don't constantly water. My survival, I know, is enhanced because I cherish the positive aspects of this fight, I appreciate feeling better even if it is just a little bit. It's important to be grateful for every little crumb because positive feelings not only build on one another they make you focus on all the good things that are happening and not the bad. This helps you slowly become mentally stronger.
Thanksgiving is a perfect holiday to share one's gratitude with their family, but this Thanksgiving is special for me. I am alive and off chemo. And, because of my disease, I've honed the skill of appreciation. Chalk another one up for the cancer card. Growing up, Thanksgivings were always hectic. I came from a family of twelve, so it was crazy. My mom always bought a 22 lb turkey which was devoured by the next day. We loved the meal complete with all the regular trimmings. She also made fresh cranberries, which I hated. One year I took a spoonful and spit it back in the bowl. My Dad got so angry at me and sent me down to the basement to eat with the dog. Consequently, I never include cranberries at my own Thanksgiving celebration.
This year, our Thanksgiving would be quaint. We celebrated with my immediate family and Mike's father. Mike's Mom and her friend Chuck stopped over in the evening for a late dessert. I enjoyed the quiet day, but I missed my Mom, Dad and siblings, too. We were especially grateful so we each took a turn expressing our thanks, crying and holding hands. It was a meal that was perfect, void of the usual bickering between the girls. Just perfect!
Advice
If you are a believer, pray, if nothing else, it creates a calming effect.
If you can't fight the fight for you, fight it for someone else, it helps bridge the gaps.
Learn to push yourself even when you don't want to, you soon find you don't have to push so hard, or even at times, at all.
Be grateful for every morsel of good.
By October 2003 the chemo side effects are getting to be too much for me to handle. Frustration is settling in, I am exhausted most of the time; this, coupled with all of the other negative side effects is wearing me down physically. Emotionally I still feel brave and I continually pray to God for help in holding on. There are so many people close to my heart struggling, so I try to keep my own feelings at bay.
Being strong for my supporters is almost a selfish act for me. When I am strong, they are strong. My mental tenacity is empowered by knowing I am setting an example for everyone. My strength comes out in subtle ways; first of all I have not crumbled up into a ball and wallowed in self pity, maybe because I am too frightened to do so for fear of what would happen if I did. If I react with fear or panic would this illness take a hold of me and swallow me up?
On the day of and the day following chemo I lay around more, this makes the kids and Mike panic a little. I continue to explain to everyone that it is the chemo and not the cancer that is making me sick. Other than chemo days I get out of bed early, before everyone else to perform my daily ritual of drinking tea and having a conversation with God in my living room or on my deck, or even standing in the woods behind my house. I make breakfast, lunch, and dinner for my family like clockwork.
My strength manifests itself by being a participant in my ordinary, everyday life. If I get depressed, I work hard at lifting myself up by thinking of all the good that I have in my life, I don't stay in bed all day long. I just march along like a little soldier. And believe me, on some days that alone, takes strength, but, you push yourself and push yourself and then one day you realize you don't have to push so hard. However, I reiterate, it is becoming increasingly more difficult to be a rock in the light of these side effects. I pray to find some other source of power. I need to find something for me. Day after day I put one foot in front of the other and trudge on. When I go to bed, my new and most favorite time of day, I pray for strength and a break until I fall asleep. Just when my situation seems to be the darkest, a little ray of light appears and I can feel hope streaming through. My tumors in the liver have shrunk a bit and have stabilized. Because of this, as well as, the doctor's concern that some of the side effects, like the neuropathy, the numbness in the hands and feet, might become permanent, the oncologist decides to take me off chemo and put me on a hormone therapy. How do ya like me now? Is all I have to say to myself. This is right up there with any of the great joys I have experienced in my life.
Femara is an oral chemotherapy drug which doesn't allow an enzyme called aromatase to convert androgens into estrogen. My cancer is estrogen receptor positive which means it is fed by estrogen. Without estrogen present the tumor can't grow and will hopefully shrink. The side effects for me are nothing. My hair has started to grow back. I don't have any bone or joint pain, nausea or hot flashes like some woman do with this drug.
I am thrilled. Thanksgiving is just around the corner and I am looking forward to actually tasting those wonderful foods like; turkey, dressing, mashed potatoes, green bean casserole and pumpkin pie, my absolute favorite dishes. Suddenly I have so much more to be thankful for.
If the hormone therapy works, the doctor tells me, I can stay on it indefinitely. The longest anyone, with my diagnosis, has survived on Femara is five years. I hope to break that record. My immediate goal for survival is nine years-- that will put the kids through high school-- but I'm working on short term goals right now; like surviving on a daily basis and then monthly basis. When I reach a goal, I set another and keep on going. Who knows? I might be here to see my children make their own lives; graduate high school, college, have careers and eventually families of their own.
When you're fighting for your life, it's important to have goals. Write them down, and look at them every day. Visualize yourself being healthy. This just helps keep you on track, once you've written a goal down you've made a commitment, keep it in a place where you'll see it every day reminding you of what you are trying to achieve. "If you can see it and believe it you can achieve it."
By mid-November, my hair has covered my head like a scruffy, short beard. I still wear a rag on my head, something I'll do until it gets to an acceptable length. The first time I went through chemo I took the scarf off as soon as I had a little growth covering my entire head, this garnered some very shocked looks from people. I was at my daughters' school picking them up. Upon walking into Katie's classroom I was welcomed with surprised looks. This was not just from the kids but adults as well. Their stares made me feel uncomfortable, but there was one little boy with red hair and glasses from Frankie's first grade class that walked past me, pointed and yelled out, "Nice haircut Mrs. Wetzel." (All the kids call me Mrs. Wetzel because it's my husband and daughter's last name, I kept my maiden name, O'Brien) leave it to a little kid to make everything better. I love that kid, he made me smile.
My eyes and nails are clearing up. I am beaming. You can't imagine how fortunate I feel to have normal nails and eyes that don't constantly water. My survival, I know, is enhanced because I cherish the positive aspects of this fight, I appreciate feeling better even if it is just a little bit. It's important to be grateful for every little crumb because positive feelings not only build on one another they make you focus on all the good things that are happening and not the bad. This helps you slowly become mentally stronger.
Thanksgiving is a perfect holiday to share one's gratitude with their family, but this Thanksgiving is special for me. I am alive and off chemo. And, because of my disease, I've honed the skill of appreciation. Chalk another one up for the cancer card. Growing up, Thanksgivings were always hectic. I came from a family of twelve, so it was crazy. My mom always bought a 22 lb turkey which was devoured by the next day. We loved the meal complete with all the regular trimmings. She also made fresh cranberries, which I hated. One year I took a spoonful and spit it back in the bowl. My Dad got so angry at me and sent me down to the basement to eat with the dog. Consequently, I never include cranberries at my own Thanksgiving celebration.
This year, our Thanksgiving would be quaint. We celebrated with my immediate family and Mike's father. Mike's Mom and her friend Chuck stopped over in the evening for a late dessert. I enjoyed the quiet day, but I missed my Mom, Dad and siblings, too. We were especially grateful so we each took a turn expressing our thanks, crying and holding hands. It was a meal that was perfect, void of the usual bickering between the girls. Just perfect!
Advice
If you are a believer, pray, if nothing else, it creates a calming effect.
If you can't fight the fight for you, fight it for someone else, it helps bridge the gaps.
Learn to push yourself even when you don't want to, you soon find you don't have to push so hard, or even at times, at all.
Be grateful for every morsel of good.
Chapter 15 - My School Year Begins Fall 2003
Chapter 15 - My school year begins Fall 2003
The kids are back in school and it is my first day of the fall semester. I walk into my Group Exercise class and meet the eyes of my classmates, some are recognizable; some are not. Most of them are young, but a few are older. I'm scared and shaking in my tennis shoes for fear of the unknown. My head scarf feels like a bright beacon of light. I pull my shoulders back and make my way to an empty seat and greet everyone with a smile and hello.
I summon up the courage to pull off a look of normalcy and act as though nothing is wrong and everything is in place. This behavior puts my classmates at ease. Some of them have heard about my condition from the teacher. The school I attend is small and it feels like a family. The Instructors are all very nice and caring. When asked, I tell everyone that I'm doing well. And really, other than the side effects, I am. If I weren't feeling well, I'd probably lie and say I was fine. Both classes were filled with lectures and doing paperwork so no physical activity today. At least I got the initial class over with. Now I can relax and just do the best I can.
School, for me, is a welcome diversion. My husband is working and the kids are at school. If I didn't have to go to school I'd have too much idle time with thoughts of my illness running through my head. If I didn't have somewhere to go I'd be tempted to go back to bed. Another key to survival, staying occupied with work, school, volunteering, anything that takes your focus away from your illness; anything that gets you out of the house. I'll push myself more in front of a crowd than I would by myself probably because I care so much about my image. A schedule and some structure is a life saver for me.
Alex's Freshman Volleyball Team needs a parent to volunteer to makes lunches for away games. The job consists of collecting money from the parents and making the meals for the girls. I put a lot of effort into making the food. I want Alex to be proud of what her Mother does for her and her teammates. I cherish every opportunity I have to do something for my kids. Right now they are my key to survival. I get such pleasure out of doing things for them. Take yourself out of your own thoughts and fears and concentrate on the things that give you satisfaction, another key to survival.
I've heard many people say that when they were given a death sentence, they wanted to do something they had never done before. Travel the world, jump out of an airplane, meet some celebrity, or just be challenged in a way that they never had before. I have no desire to do any of that.
My wish is to keep my life as normal as possible. Cherish the moments I get to watch Frankie at gymnastics, or Katie and Alex playing volleyball. Those times fill my life with joy. I even look forward to helping my youngest with her homework. Now that's a challenge, since homework isn't her favorite subject! But it is important time that I get to spend with her.
You'd be surprised at how your life can change on a dime when you get life threatening news. You'd also be surprised at how easy it is to change in those circumstances. I'm not sure how much I've changed in regard to material possessions, I've always known that they can't make you happy, or if they do, it’s a fleeting moment. My relationships with my family and friends are the only things that give me meaning now. When I received the news of my illness I didn't think about the size of my home or the kind of car I drive, I wondered what kind of Mom, wife, sister, daughter or friend have I been.
Improving my relationship with me is another item on my agenda. I need to take better care of Kristy and her feelings. I tend to put other people first. My self esteem isn't as high as it should be. Self deprecation has accompanied me my whole life. I never wanted people to think I was full of myself or boastful, so I put myself down. Being sick has helped me work on those character blemishes.
My education and the kids sporting events have made the fall fly by. The Elementary, Jr. High and High School Volleyball season is coming to an end. All three of my girls play volleyball for their schools. We are at volleyball games at least four times a week. If we are not at games we are driving to and from practices. Frankie not only does volleyball, she has gymnastics practice three times a week. Throw in a little school and homework and you have a recipe for busy lives. The routine keeps us physically busy and our minds occupied. Our schedule doesn't leave time to think about our reality, which is o.k. for now.
Advice
Face your fears, keep your head held high and do what you need to do. The looks people give you when sporting a scarf are most often looks of compassion.
Stay as busy as your health will allow, not to pretend that your illness isn't happening, but to take your mind away from your illness for a little while.
Concentrate on things that bring you satisfaction.
If you want to do something you've never done before, do it, do whatever you feel is going to make you happy.
The kids are back in school and it is my first day of the fall semester. I walk into my Group Exercise class and meet the eyes of my classmates, some are recognizable; some are not. Most of them are young, but a few are older. I'm scared and shaking in my tennis shoes for fear of the unknown. My head scarf feels like a bright beacon of light. I pull my shoulders back and make my way to an empty seat and greet everyone with a smile and hello.
I summon up the courage to pull off a look of normalcy and act as though nothing is wrong and everything is in place. This behavior puts my classmates at ease. Some of them have heard about my condition from the teacher. The school I attend is small and it feels like a family. The Instructors are all very nice and caring. When asked, I tell everyone that I'm doing well. And really, other than the side effects, I am. If I weren't feeling well, I'd probably lie and say I was fine. Both classes were filled with lectures and doing paperwork so no physical activity today. At least I got the initial class over with. Now I can relax and just do the best I can.
School, for me, is a welcome diversion. My husband is working and the kids are at school. If I didn't have to go to school I'd have too much idle time with thoughts of my illness running through my head. If I didn't have somewhere to go I'd be tempted to go back to bed. Another key to survival, staying occupied with work, school, volunteering, anything that takes your focus away from your illness; anything that gets you out of the house. I'll push myself more in front of a crowd than I would by myself probably because I care so much about my image. A schedule and some structure is a life saver for me.
Alex's Freshman Volleyball Team needs a parent to volunteer to makes lunches for away games. The job consists of collecting money from the parents and making the meals for the girls. I put a lot of effort into making the food. I want Alex to be proud of what her Mother does for her and her teammates. I cherish every opportunity I have to do something for my kids. Right now they are my key to survival. I get such pleasure out of doing things for them. Take yourself out of your own thoughts and fears and concentrate on the things that give you satisfaction, another key to survival.
I've heard many people say that when they were given a death sentence, they wanted to do something they had never done before. Travel the world, jump out of an airplane, meet some celebrity, or just be challenged in a way that they never had before. I have no desire to do any of that.
My wish is to keep my life as normal as possible. Cherish the moments I get to watch Frankie at gymnastics, or Katie and Alex playing volleyball. Those times fill my life with joy. I even look forward to helping my youngest with her homework. Now that's a challenge, since homework isn't her favorite subject! But it is important time that I get to spend with her.
You'd be surprised at how your life can change on a dime when you get life threatening news. You'd also be surprised at how easy it is to change in those circumstances. I'm not sure how much I've changed in regard to material possessions, I've always known that they can't make you happy, or if they do, it’s a fleeting moment. My relationships with my family and friends are the only things that give me meaning now. When I received the news of my illness I didn't think about the size of my home or the kind of car I drive, I wondered what kind of Mom, wife, sister, daughter or friend have I been.
Improving my relationship with me is another item on my agenda. I need to take better care of Kristy and her feelings. I tend to put other people first. My self esteem isn't as high as it should be. Self deprecation has accompanied me my whole life. I never wanted people to think I was full of myself or boastful, so I put myself down. Being sick has helped me work on those character blemishes.
My education and the kids sporting events have made the fall fly by. The Elementary, Jr. High and High School Volleyball season is coming to an end. All three of my girls play volleyball for their schools. We are at volleyball games at least four times a week. If we are not at games we are driving to and from practices. Frankie not only does volleyball, she has gymnastics practice three times a week. Throw in a little school and homework and you have a recipe for busy lives. The routine keeps us physically busy and our minds occupied. Our schedule doesn't leave time to think about our reality, which is o.k. for now.
Advice
Face your fears, keep your head held high and do what you need to do. The looks people give you when sporting a scarf are most often looks of compassion.
Stay as busy as your health will allow, not to pretend that your illness isn't happening, but to take your mind away from your illness for a little while.
Concentrate on things that bring you satisfaction.
If you want to do something you've never done before, do it, do whatever you feel is going to make you happy.
Monday, January 24, 2011
Chapter 14 - August 2003 -The School Year Begins
Chapter 14 - August 2003 - The School Year Begins
We have yet to go school shopping, a tradition my children love. They like buying backpacks, shoes, socks; you name it, if it's new they like it, even school uniforms.
This year Alex will be a freshman in High School, Katie will be in seventh grade, the Junior High years, and Frankie will be in the fourth grade. Living with the fear of losing a parent isn't something these young kids should have to think about. They have grown-up a lot over the past few months. Alex tried out for the freshman volleyball team and made it. She felt guilty because she prayed to make the team when in her mind she should have prayed for me to get well. I told her that one prayer doesn't cancel out the other.
My illness has changed all of my kids. Alex deals with it by trying to be as good as she can. Katie doesn't like to think about it or talk about it; she has begun to keep her feelings even closer to her vest, because what she feels just hurts too much. And Frankie clings to me like glue for fear of losing me. This illness will be paramount in shaping their lives. Alex carries the fear that she'll have to be mother to her two younger siblings, Katie, thinking she's the strongest one, also feels like she is going to have to be the rock for everyone if something happens to me. And Frankie is already showing signs of separation anxiety. I pray that I can be here long enough to raise them.
School starts in a few days for me as well. I have been working on an Associates of Applied Science Degree. I have just two classes left; one of them is a group exercise class which means it will be a physical class. I'm fearful about my energy level because of chemo and my ability to participate in the class, but I want this degree whether I use it or not. I've resolved myself to just doing it.
At the beginning of a school year there has always been excitement in the air, whether for me or for my children. It is the start of something fresh. I like schedules, and organization, school or work fit that bill. As a child I didn't see many friends over the summer so the new school year meant seeing old friends and perhaps meeting new ones. The end of summer soon leads to the beginning of the fall with football games, crisp sunny weather and leaves turning all sorts of beautiful, brilliant colors. This time of year brings back many wonderful memories for me. Now I wonder how many more times I will witness the fall of a year or see my kids off to school. My daily prayer starts with the request to get them all graduated from high school. I know I say that a lot, but in my opinion you have to state what you want over and over and over again and keep it in the forefront of your mind to realize it.
Today we have a mandatory parent, back to school meeting. I'm feeling apprehensive about going because of the scarf I'm wearing. I feel conspicuous. People stare at me in sadness or shock or in confusion about what to say and do. I still have the $1,000 wig from my original Breast Cancer, but it is hot, uncomfortable and awkward to wear. I wore it about ten times because it is adhered to the head with double stick tape which created a hassle when putting it on, and when you sweat there is nothing to stop the perspiration so it drips down your forehead. Not to mention, I look like Joan Collins on a bad day in it.
Harm is not meant by the stares, it's just unusual to see someone in a scarf. When I meet a person's staring eyes they quickly look away. Generally, I try to make people feel comfortable around me by pointing out the obvious, or making a joke, but that behavior, even though it is all me, is tiring and I don't have the energy. I continually try not to care so much about what others may or may not think of me.
Losing one's hair through chemo is one of the many difficult aspects of this disease. Your hair frames your face. It has a personality of its own. Eyebrows and eyelashes also come in handy to complete your look. When you don't have these things people know immediately that you are sick. It is hard to hide behind the "look" of chemo. However, I do try with make-up. The other day I was putting on mascara but my lids kept getting black. I looked closer in the mirror and realized I only had one eyelash left. I decided to spruce it up with a little mascara. If I ever write a book I may title it; I had one eyelash left, but it still had mascara on it. Remember, humor is a necessary ingredient to my survival.
Chemo can save your life so you put up with it. Some chemo is worse than others. My current chemo is the most difficult to date. As I've stated, food has lost its taste. The Macrobiotic diet is gone and has been replaced by Ramon Noodles, baby food and Swiss Miss Pudding, the only things that my mouth, full of sores, can tolerate.
My weight loss is getting more noticeable. I look like a refugee from a concentration camp. Forcing myself to eat is a daily grind and I can only eat until my hunger is somewhat satisfied, partly because it is a painful process and partly because I have try to maintain my weight. This convinces me that eating, dieting, having to eat, is all a mind game. When I was young and overweight, trying to diet, all I could think about was food and how much I wanted it. Now, I know I have to eat to keep my weight up and it is the last thing I want to do.
When I had the original breast cancer I knew I would be on chemo for a short period of time. My Doctor is telling me now that I'll probably be on some form of chemo for the rest of my life. Is this how I'm going to feel all the time? If so, my life's quality will be diminished. This is the time that I need to get my mind around how to survive. It is much more difficult to fight for your life when you feel like crap most of the time, so right now I'm doing it for my loved ones.
My first thought is to live for my children and husband. If I can stay alive for them, I'll eventually be able to stay alive for me, I'll find a way. I keep the thought in my mind that there are other chemo therapies out there. There are advances in medicine all of the time. If this one gets too bad, I'll try another. There is always hope.
Keeping my head held high, whether I feel like it or not, is imperative to me. Everyone around me feels more confident about my survival, which puts them at ease and it makes me feel better as well. Being strong in this fight is not just a show for my loved ones. A thought is a precursor to an action. Therefore, positive, strong thoughts create positive, confident actions. This is my motto.
Today I have another round of chemo and an appointment with my Oncologist. We discuss the less than positive side effects of the drugs. He tells me that I need to stay on the chemo as long as it shrinks the tumor, if it stops doing that, he'll put me on a hormone therapy. In addition to my mouth sores, my nails are separating from their beds and they smell, really bad. I told one of my sisters that my nails were dying and she informed me that nails are already dead. I told her that they were deader now. My eyes are also watering constantly so I have to bring my fingers with my dead, stinky nails to my eyes to dab them with a Kleenex. So Gross!
The only good thing I found from this condition was getting out of a moving violation from my friendly neighborhood Police Officer. I was in a hurry and little lost. In my confusion, I didn't make a complete stop at a stop sign. He pulled me over, he was a young fellow, and slowly walked up to my van. When he got to my window, he took one look at my scarf, my watering eyes and my dead nails, got a look of shock and pity on his face, and said, "miss, are you aware that you made a rolling stop back there at that stop sign?" I replied, "I realized it when I saw you driving after me." He told me, in an, oh so polite manner, to be more careful next time and sent me on my way. Chalk one up for the cancer card.
Advice
A serious illness will change the dynamics of a family; do the best that you can to acknowledge this by keeping all lines of communication and love open, this will help.
Chemo is a tough pill to swallow, realize that there are different medicines out there that may be better suited for you. Talk with your Doctor.
Hold onto anything positive that you can to get you through the roughest patches. There is always a light at the end of the tunnel.
Find the humor in your situation because it is there. It all depends upon how you look at things.
We have yet to go school shopping, a tradition my children love. They like buying backpacks, shoes, socks; you name it, if it's new they like it, even school uniforms.
This year Alex will be a freshman in High School, Katie will be in seventh grade, the Junior High years, and Frankie will be in the fourth grade. Living with the fear of losing a parent isn't something these young kids should have to think about. They have grown-up a lot over the past few months. Alex tried out for the freshman volleyball team and made it. She felt guilty because she prayed to make the team when in her mind she should have prayed for me to get well. I told her that one prayer doesn't cancel out the other.
My illness has changed all of my kids. Alex deals with it by trying to be as good as she can. Katie doesn't like to think about it or talk about it; she has begun to keep her feelings even closer to her vest, because what she feels just hurts too much. And Frankie clings to me like glue for fear of losing me. This illness will be paramount in shaping their lives. Alex carries the fear that she'll have to be mother to her two younger siblings, Katie, thinking she's the strongest one, also feels like she is going to have to be the rock for everyone if something happens to me. And Frankie is already showing signs of separation anxiety. I pray that I can be here long enough to raise them.
School starts in a few days for me as well. I have been working on an Associates of Applied Science Degree. I have just two classes left; one of them is a group exercise class which means it will be a physical class. I'm fearful about my energy level because of chemo and my ability to participate in the class, but I want this degree whether I use it or not. I've resolved myself to just doing it.
At the beginning of a school year there has always been excitement in the air, whether for me or for my children. It is the start of something fresh. I like schedules, and organization, school or work fit that bill. As a child I didn't see many friends over the summer so the new school year meant seeing old friends and perhaps meeting new ones. The end of summer soon leads to the beginning of the fall with football games, crisp sunny weather and leaves turning all sorts of beautiful, brilliant colors. This time of year brings back many wonderful memories for me. Now I wonder how many more times I will witness the fall of a year or see my kids off to school. My daily prayer starts with the request to get them all graduated from high school. I know I say that a lot, but in my opinion you have to state what you want over and over and over again and keep it in the forefront of your mind to realize it.
Today we have a mandatory parent, back to school meeting. I'm feeling apprehensive about going because of the scarf I'm wearing. I feel conspicuous. People stare at me in sadness or shock or in confusion about what to say and do. I still have the $1,000 wig from my original Breast Cancer, but it is hot, uncomfortable and awkward to wear. I wore it about ten times because it is adhered to the head with double stick tape which created a hassle when putting it on, and when you sweat there is nothing to stop the perspiration so it drips down your forehead. Not to mention, I look like Joan Collins on a bad day in it.
Harm is not meant by the stares, it's just unusual to see someone in a scarf. When I meet a person's staring eyes they quickly look away. Generally, I try to make people feel comfortable around me by pointing out the obvious, or making a joke, but that behavior, even though it is all me, is tiring and I don't have the energy. I continually try not to care so much about what others may or may not think of me.
Losing one's hair through chemo is one of the many difficult aspects of this disease. Your hair frames your face. It has a personality of its own. Eyebrows and eyelashes also come in handy to complete your look. When you don't have these things people know immediately that you are sick. It is hard to hide behind the "look" of chemo. However, I do try with make-up. The other day I was putting on mascara but my lids kept getting black. I looked closer in the mirror and realized I only had one eyelash left. I decided to spruce it up with a little mascara. If I ever write a book I may title it; I had one eyelash left, but it still had mascara on it. Remember, humor is a necessary ingredient to my survival.
Chemo can save your life so you put up with it. Some chemo is worse than others. My current chemo is the most difficult to date. As I've stated, food has lost its taste. The Macrobiotic diet is gone and has been replaced by Ramon Noodles, baby food and Swiss Miss Pudding, the only things that my mouth, full of sores, can tolerate.
My weight loss is getting more noticeable. I look like a refugee from a concentration camp. Forcing myself to eat is a daily grind and I can only eat until my hunger is somewhat satisfied, partly because it is a painful process and partly because I have try to maintain my weight. This convinces me that eating, dieting, having to eat, is all a mind game. When I was young and overweight, trying to diet, all I could think about was food and how much I wanted it. Now, I know I have to eat to keep my weight up and it is the last thing I want to do.
When I had the original breast cancer I knew I would be on chemo for a short period of time. My Doctor is telling me now that I'll probably be on some form of chemo for the rest of my life. Is this how I'm going to feel all the time? If so, my life's quality will be diminished. This is the time that I need to get my mind around how to survive. It is much more difficult to fight for your life when you feel like crap most of the time, so right now I'm doing it for my loved ones.
My first thought is to live for my children and husband. If I can stay alive for them, I'll eventually be able to stay alive for me, I'll find a way. I keep the thought in my mind that there are other chemo therapies out there. There are advances in medicine all of the time. If this one gets too bad, I'll try another. There is always hope.
Keeping my head held high, whether I feel like it or not, is imperative to me. Everyone around me feels more confident about my survival, which puts them at ease and it makes me feel better as well. Being strong in this fight is not just a show for my loved ones. A thought is a precursor to an action. Therefore, positive, strong thoughts create positive, confident actions. This is my motto.
Today I have another round of chemo and an appointment with my Oncologist. We discuss the less than positive side effects of the drugs. He tells me that I need to stay on the chemo as long as it shrinks the tumor, if it stops doing that, he'll put me on a hormone therapy. In addition to my mouth sores, my nails are separating from their beds and they smell, really bad. I told one of my sisters that my nails were dying and she informed me that nails are already dead. I told her that they were deader now. My eyes are also watering constantly so I have to bring my fingers with my dead, stinky nails to my eyes to dab them with a Kleenex. So Gross!
The only good thing I found from this condition was getting out of a moving violation from my friendly neighborhood Police Officer. I was in a hurry and little lost. In my confusion, I didn't make a complete stop at a stop sign. He pulled me over, he was a young fellow, and slowly walked up to my van. When he got to my window, he took one look at my scarf, my watering eyes and my dead nails, got a look of shock and pity on his face, and said, "miss, are you aware that you made a rolling stop back there at that stop sign?" I replied, "I realized it when I saw you driving after me." He told me, in an, oh so polite manner, to be more careful next time and sent me on my way. Chalk one up for the cancer card.
Advice
A serious illness will change the dynamics of a family; do the best that you can to acknowledge this by keeping all lines of communication and love open, this will help.
Chemo is a tough pill to swallow, realize that there are different medicines out there that may be better suited for you. Talk with your Doctor.
Hold onto anything positive that you can to get you through the roughest patches. There is always a light at the end of the tunnel.
Find the humor in your situation because it is there. It all depends upon how you look at things.
Sunday, January 23, 2011
Chapter 13 The Greywitt's Arrive, The Last Visitors of the Summer
Chapter 13 The Greywitts's Arrive, the Last Visitors of the Summer
Angie and I, out of all my siblings, lead the most similar lives. We both married over achievers with a little perfectionist on the side. They can be somewhat obsessive about things like the yard, cars, shoveling, the house, you name it, whatever it is, it has done just right. Because of this, there is a bit of yelling that goes on around our homes, wanting things done in a particular way creates a lot of work and sometimes, tension. Angie and I share a similar sense of humor, we are amused by the same type of antics, we are more comfortable with organization than we are with disarray, we love to laugh and we like to be in shape, she is a runner and I like strength conditioning. The Greywitt family is made up of all boys, two are Angie's biological sons and two are her step sons. Their boys are handsome with an extremely quick wit, as well as amusing. Alex, Katie and Frankie love interacting with them, whether it be laughing, playing or fighting. When we go to Minnesota for a visit, the excitement is palpable but after a few days they start to fight, just like siblings.
Angie was willing to take charge the moment she stepped in the door, but they had just made a twelve hour trip and were tired. We hugged, cried, relaxed, visited during a nice dinner, and then she got to work cleaning up the kitchen with Mike and Rico. The next day, there was laundry to be done, breakfast, lunch and dinner to be made, dishes to be washed and she tried to do it all. Her husband Rico is not one to let any grass grow under his feet so he was also busy doing whatever he could to help. The kids were satisfied to be entertained by Michael, Rico's youngest son from his first, marriage who is an exact replica of Jim Kerry, he looks a little like him and can copy his jokes and mannerisms to hysterical perfection. Sean and Charlie, Angie's youngest sons join in on the joking until the house is roaring with laughter. Laughter is such a beautiful gift at this time, it makes your troubles disappear for the moment. This is a time to be grateful and cherish.
I was due to have my third chemo treatment during Angie's visit. Accompanying me to the clinic was not an easy feat for her because she is uncomfortable with hospitals, clinics, any type of medical facility or procedure. Angie faints at the drop of the hat. She takes a look at a cut or blood and she hits the floor faster than I can eat a meal when I'm starved. There are a number of stories I could tell about Angie fainting at a Dr. visit, but one in particular, she went to the hospital when her step son Ricky crashed on his bike, he did some major damage to his nose and mouth, he was bleeding and in rough shape. She apprehensively walked into the exam room with Rico and Ricky, the Dr. arrived said a few words, started looking at the damage done to Ricky's face and Angie went down before the words, "I'm going to faint, " finished coming out. She is a trooper for trying.
I went in to get my blood drawn before chemo and to get my port accessed. They draw your blood prior to chemo to make sure that your counts are high enough to be able to have the drug administered. The Technician sticks a needle into your port, it's like an IV, but much easier than trying to find a vein, and tapes it up so it will stay during chemo. When Angie witnessed this she got a little queasy and couldn't look at it, but she didn't faint. We had a good day at chemo. When we arrived home everyone pitched in to make dinner while I rested. After dinner we retired to the family room for a movie and then we all went to bed.
It is Wednesday, another healing mass awaits me. Angie is a spiritual person and she attends a non denominational church so she has an open mind about God and healings, etc., she just isn't a Catholic any longer. The two of us ventured out for my fourth and last healing from the Sister Monica. We sat behind an elderly woman who had a severe gas problem. Every two minutes she farted loud and clear. This made it quite difficult to concentrate at the task at hand, improving my health. First it was, "Oh, the poor lady," then it was, rolling eyes with an, I can't take this look, then it was, " Oh my God it stinks in here," until finally it became hands over the face in prayer position dropped head, muffled laughter. It reminded me of what it was like going to mass with my siblings. There would be anywhere from eight to twelve of us sitting in a pew and someone would do something to make us all giggle. We could barely contain our laughter and then one of us would bust out and unfortunately get the attention of other parishioners as well as our parents, and get in trouble. We were always in trouble at mass.
Needless to say, I didn't get much out of the last healing, other than joyous camaraderie with my little sister, as I've called her all my life. I refer back to the little Irishman, who said that you really have to believe that each healing will help you and you have to take it seriously, as well as come often. I don't think I was in the right frame of mind going into the last three healings. I believe that becoming well takes a certain mind set. You truly have to focus in on what you want and need, and you have to believe it can happen for you. Sitting next to a farting machine is a bit distracting, at least for me. I've decided to stop going to the healing. I might return someday when I have more faith.
Angie and her family left today. We were sad to see them go, but the summer will be over soon and it is time for the kids to get ready to go back to school. Our lives need to get back to a normal, steady pace.
Advice
Enjoy your relationships one at a time If you have many family members or friends. Have them spread their visits out. Spend one on one meaningful time with them when you feel up to it. Don't have people come over when you are not well, if it's too taxing on you.
If you have extended stay visitors, let them help you, that is why they are there. Don't feel guilty about lying down when you've had too much.
Laugh, Laugh, Laugh! Laughter is extremely healing do it as often as you can. Find the humor in life cause there is so much of it.
Angie and I, out of all my siblings, lead the most similar lives. We both married over achievers with a little perfectionist on the side. They can be somewhat obsessive about things like the yard, cars, shoveling, the house, you name it, whatever it is, it has done just right. Because of this, there is a bit of yelling that goes on around our homes, wanting things done in a particular way creates a lot of work and sometimes, tension. Angie and I share a similar sense of humor, we are amused by the same type of antics, we are more comfortable with organization than we are with disarray, we love to laugh and we like to be in shape, she is a runner and I like strength conditioning. The Greywitt family is made up of all boys, two are Angie's biological sons and two are her step sons. Their boys are handsome with an extremely quick wit, as well as amusing. Alex, Katie and Frankie love interacting with them, whether it be laughing, playing or fighting. When we go to Minnesota for a visit, the excitement is palpable but after a few days they start to fight, just like siblings.
Angie was willing to take charge the moment she stepped in the door, but they had just made a twelve hour trip and were tired. We hugged, cried, relaxed, visited during a nice dinner, and then she got to work cleaning up the kitchen with Mike and Rico. The next day, there was laundry to be done, breakfast, lunch and dinner to be made, dishes to be washed and she tried to do it all. Her husband Rico is not one to let any grass grow under his feet so he was also busy doing whatever he could to help. The kids were satisfied to be entertained by Michael, Rico's youngest son from his first, marriage who is an exact replica of Jim Kerry, he looks a little like him and can copy his jokes and mannerisms to hysterical perfection. Sean and Charlie, Angie's youngest sons join in on the joking until the house is roaring with laughter. Laughter is such a beautiful gift at this time, it makes your troubles disappear for the moment. This is a time to be grateful and cherish.
I was due to have my third chemo treatment during Angie's visit. Accompanying me to the clinic was not an easy feat for her because she is uncomfortable with hospitals, clinics, any type of medical facility or procedure. Angie faints at the drop of the hat. She takes a look at a cut or blood and she hits the floor faster than I can eat a meal when I'm starved. There are a number of stories I could tell about Angie fainting at a Dr. visit, but one in particular, she went to the hospital when her step son Ricky crashed on his bike, he did some major damage to his nose and mouth, he was bleeding and in rough shape. She apprehensively walked into the exam room with Rico and Ricky, the Dr. arrived said a few words, started looking at the damage done to Ricky's face and Angie went down before the words, "I'm going to faint, " finished coming out. She is a trooper for trying.
I went in to get my blood drawn before chemo and to get my port accessed. They draw your blood prior to chemo to make sure that your counts are high enough to be able to have the drug administered. The Technician sticks a needle into your port, it's like an IV, but much easier than trying to find a vein, and tapes it up so it will stay during chemo. When Angie witnessed this she got a little queasy and couldn't look at it, but she didn't faint. We had a good day at chemo. When we arrived home everyone pitched in to make dinner while I rested. After dinner we retired to the family room for a movie and then we all went to bed.
It is Wednesday, another healing mass awaits me. Angie is a spiritual person and she attends a non denominational church so she has an open mind about God and healings, etc., she just isn't a Catholic any longer. The two of us ventured out for my fourth and last healing from the Sister Monica. We sat behind an elderly woman who had a severe gas problem. Every two minutes she farted loud and clear. This made it quite difficult to concentrate at the task at hand, improving my health. First it was, "Oh, the poor lady," then it was, rolling eyes with an, I can't take this look, then it was, " Oh my God it stinks in here," until finally it became hands over the face in prayer position dropped head, muffled laughter. It reminded me of what it was like going to mass with my siblings. There would be anywhere from eight to twelve of us sitting in a pew and someone would do something to make us all giggle. We could barely contain our laughter and then one of us would bust out and unfortunately get the attention of other parishioners as well as our parents, and get in trouble. We were always in trouble at mass.
Needless to say, I didn't get much out of the last healing, other than joyous camaraderie with my little sister, as I've called her all my life. I refer back to the little Irishman, who said that you really have to believe that each healing will help you and you have to take it seriously, as well as come often. I don't think I was in the right frame of mind going into the last three healings. I believe that becoming well takes a certain mind set. You truly have to focus in on what you want and need, and you have to believe it can happen for you. Sitting next to a farting machine is a bit distracting, at least for me. I've decided to stop going to the healing. I might return someday when I have more faith.
Angie and her family left today. We were sad to see them go, but the summer will be over soon and it is time for the kids to get ready to go back to school. Our lives need to get back to a normal, steady pace.
Advice
Enjoy your relationships one at a time If you have many family members or friends. Have them spread their visits out. Spend one on one meaningful time with them when you feel up to it. Don't have people come over when you are not well, if it's too taxing on you.
If you have extended stay visitors, let them help you, that is why they are there. Don't feel guilty about lying down when you've had too much.
Laugh, Laugh, Laugh! Laughter is extremely healing do it as often as you can. Find the humor in life cause there is so much of it.
Friday, January 21, 2011
Chapter 12 Younger Sister Mary and her Son Jack Arrive
Chapter 12 Younger sister Mary and her son Jack Arrive
My next visitors are my younger sister Mary and her son Jack. Mary's husband Pete was unable to get away so they make the 12 hour drive themselves. Mary is three years my junior and we have always gotten along well, other than the one year that that we didn't speak to each other because I delivered the news that her boyfriend was a lying, cheating skunk of a guy, who didn't deserve her. It was a shoot the messenger kind of not talking thing. She eventually dumped him, we made up and all was right with the world.
Mary and my husband Mike are taking me to chemo today. This is a selfless act and a great challenge for Mary because she lost her first husband, Chuck, six years ago to cancer of the lungs. He was diagnosed with stage four Lung Cancer in January 1995 and died January 3rd 1996 at the age of 38, leaving behind my heartbroken sister, and their four year old son Jack.
Chuck was not a smoker, but an avid athlete of all sports, especially skiing, both water and downhill and of course hockey, a sport where you really need a good set of lungs. The guy was full of life with blue eyes and a big bravado laugh. The world lost a special person the day he passed. Initially he was not able to have any chemo because the Drs. thought it to be futile, but toward the end he did have a few treatments. Chuck tried the Macrobiotic Diet as well, he hated it, but Mary took the pains of researching, preparing and cooking the meals for their family. He also frequented a Chinese Healer who thought Chuck could be cured by this practice. He wasn't! The day he went off the Macrobiotic Diet he had a cheeseburger from McDonald's, he was in heaven.
An inspirational story came out of the ashes of Chuck's death. As he lingered on for his family, Mary could see his pain, tethered to an oxygen tank, fear of suffocating to death, throwing up blood and losing his bowels, she told him it was ok to let go, both her and their son Jack would be fine. One request, however, escaped from Mary's lips, "Give me a sign that you are ok." He answered, "I'll be the cardinal at the birdfeeder." He died at home with his family surrounding him, as he took his last breath, his Mother stated that he was gone. Everyone quietly shed their tears until one of his sister's looked up and saw a cardinal sitting at the birdfeeder. The family all watched in awe as the bird sat there motionless until a female cardinal perched herself next to him and then they both flew away. Mary's comment was, "Oh look he's already got a girlfriend."
Shortly after Chuck died, we got the call to come to Minnesota for the funeral. I walked to the window and looked out onto the snowy blizzard we were having in Ohio and started to cry. All of a sudden, a bright red cardinal dive bombed the window. This made me stop crying for a moment to admire the beautiful contrast of the red bird against the white snow. I would not hear Mary's cardinal story until I arrived a few days later in Minnesota. Every time we see a cardinal now we call it Chuck. I wake up in the morning and see Chuck chirping in the tree and I call out, "How's it goin' Chuck?"
After three years, Mary met and married her second husband, a great guy named Pete who also went through the pain of losing a spouse. It is comforting to know that life goes on after death. If I am to die I hope that one day Mike would meet someone to love again and be happy with.
Today is Mary's first time back to an Oncology Department since the loss of Chuck. Her uncomfortable feelings don't stop her from coming or being the little protective, got your back, bull-dog that she is. She knew I was tired and groggy from the pre-meds that they give you prior to your chemo. I was having a hard time answering the Social Worker's questions so, prior to asking her to leave Mary was virtually boring a hole through the woman with a, it's time to go, look. She politely asked her to let me get some rest. I would have just kept talking until she left.
We had a wonderful visit with Mary and Jack. Every evening she would give me a glorious foot rub which helped tremendously with the neuropathy side effects of the chemo. The neuropathy made my hands and feet a little numb and tingly, it feels almost like a limb falling asleep which gets tingly when it wakes up again. A foot rub is heaven to me and it was a loving and kind gesture.
During the day we would go the beach and sit on the rocks and visualize the positive energy flowing from the waves and moving into our bodies to heal us, or we would walk the shore and talk and laugh.
Her son Jack was a delight to have around as well. He is polite, smart and funny. The girls spent their days playing with him, running, riding bikes or swimming. To look at them all you wouldn't think they had a care in the world.
Mary got up early every morning and helped me feed the kids and pick up the house. My relaxation was a priority of hers. I have a difficult time taking it easy, even when I'm sick, but especially when I have company. Mary also accompanied me to my third visit to the healing nun. Mary and her husband Pete practice Catholicism so she was open to the idea. Sister Monica, true to form was a bit brusque, which Mary didn't like, and again, for whatever reason, the experience proved to be less exhilarating than the first time.
It is time for Mary and Jack to pack up their belongings and head for home. I cherish the time that I have had with them as well as each and every one of my family members. Every experience has been unique and heartfelt. My sister Angie, her husband Rico, along with three of their four sons, Mike, Sean and Charlie, are on their way out for our last visit of the Summer. Their oldest, Ricky can't make the drive.
Advice
Let different friends and family take you to chemo visits, they divert your attention from what's going on and it is a wonderful bonding time for all.
If you get an offer for a foot rub, back rub, etc. take it. Being pampered when you are not feeling well makes your suffering a little better.
Go to your favorite nature places to breathe in all the positive energy that you feel there. Take nice big slow deep breaths, visualizing healing as it flows into the body, as you exhale think of the disease leaving your body. You will feel invigorated.
Take the time to relax during your worst days after chemo, don't stay in bed 24/7, but take several power naps combined with wake times of moving around and occupying your time.
My next visitors are my younger sister Mary and her son Jack. Mary's husband Pete was unable to get away so they make the 12 hour drive themselves. Mary is three years my junior and we have always gotten along well, other than the one year that that we didn't speak to each other because I delivered the news that her boyfriend was a lying, cheating skunk of a guy, who didn't deserve her. It was a shoot the messenger kind of not talking thing. She eventually dumped him, we made up and all was right with the world.
Mary and my husband Mike are taking me to chemo today. This is a selfless act and a great challenge for Mary because she lost her first husband, Chuck, six years ago to cancer of the lungs. He was diagnosed with stage four Lung Cancer in January 1995 and died January 3rd 1996 at the age of 38, leaving behind my heartbroken sister, and their four year old son Jack.
Chuck was not a smoker, but an avid athlete of all sports, especially skiing, both water and downhill and of course hockey, a sport where you really need a good set of lungs. The guy was full of life with blue eyes and a big bravado laugh. The world lost a special person the day he passed. Initially he was not able to have any chemo because the Drs. thought it to be futile, but toward the end he did have a few treatments. Chuck tried the Macrobiotic Diet as well, he hated it, but Mary took the pains of researching, preparing and cooking the meals for their family. He also frequented a Chinese Healer who thought Chuck could be cured by this practice. He wasn't! The day he went off the Macrobiotic Diet he had a cheeseburger from McDonald's, he was in heaven.
An inspirational story came out of the ashes of Chuck's death. As he lingered on for his family, Mary could see his pain, tethered to an oxygen tank, fear of suffocating to death, throwing up blood and losing his bowels, she told him it was ok to let go, both her and their son Jack would be fine. One request, however, escaped from Mary's lips, "Give me a sign that you are ok." He answered, "I'll be the cardinal at the birdfeeder." He died at home with his family surrounding him, as he took his last breath, his Mother stated that he was gone. Everyone quietly shed their tears until one of his sister's looked up and saw a cardinal sitting at the birdfeeder. The family all watched in awe as the bird sat there motionless until a female cardinal perched herself next to him and then they both flew away. Mary's comment was, "Oh look he's already got a girlfriend."
Shortly after Chuck died, we got the call to come to Minnesota for the funeral. I walked to the window and looked out onto the snowy blizzard we were having in Ohio and started to cry. All of a sudden, a bright red cardinal dive bombed the window. This made me stop crying for a moment to admire the beautiful contrast of the red bird against the white snow. I would not hear Mary's cardinal story until I arrived a few days later in Minnesota. Every time we see a cardinal now we call it Chuck. I wake up in the morning and see Chuck chirping in the tree and I call out, "How's it goin' Chuck?"
After three years, Mary met and married her second husband, a great guy named Pete who also went through the pain of losing a spouse. It is comforting to know that life goes on after death. If I am to die I hope that one day Mike would meet someone to love again and be happy with.
Today is Mary's first time back to an Oncology Department since the loss of Chuck. Her uncomfortable feelings don't stop her from coming or being the little protective, got your back, bull-dog that she is. She knew I was tired and groggy from the pre-meds that they give you prior to your chemo. I was having a hard time answering the Social Worker's questions so, prior to asking her to leave Mary was virtually boring a hole through the woman with a, it's time to go, look. She politely asked her to let me get some rest. I would have just kept talking until she left.
We had a wonderful visit with Mary and Jack. Every evening she would give me a glorious foot rub which helped tremendously with the neuropathy side effects of the chemo. The neuropathy made my hands and feet a little numb and tingly, it feels almost like a limb falling asleep which gets tingly when it wakes up again. A foot rub is heaven to me and it was a loving and kind gesture.
During the day we would go the beach and sit on the rocks and visualize the positive energy flowing from the waves and moving into our bodies to heal us, or we would walk the shore and talk and laugh.
Her son Jack was a delight to have around as well. He is polite, smart and funny. The girls spent their days playing with him, running, riding bikes or swimming. To look at them all you wouldn't think they had a care in the world.
Mary got up early every morning and helped me feed the kids and pick up the house. My relaxation was a priority of hers. I have a difficult time taking it easy, even when I'm sick, but especially when I have company. Mary also accompanied me to my third visit to the healing nun. Mary and her husband Pete practice Catholicism so she was open to the idea. Sister Monica, true to form was a bit brusque, which Mary didn't like, and again, for whatever reason, the experience proved to be less exhilarating than the first time.
It is time for Mary and Jack to pack up their belongings and head for home. I cherish the time that I have had with them as well as each and every one of my family members. Every experience has been unique and heartfelt. My sister Angie, her husband Rico, along with three of their four sons, Mike, Sean and Charlie, are on their way out for our last visit of the Summer. Their oldest, Ricky can't make the drive.
Advice
Let different friends and family take you to chemo visits, they divert your attention from what's going on and it is a wonderful bonding time for all.
If you get an offer for a foot rub, back rub, etc. take it. Being pampered when you are not feeling well makes your suffering a little better.
Go to your favorite nature places to breathe in all the positive energy that you feel there. Take nice big slow deep breaths, visualizing healing as it flows into the body, as you exhale think of the disease leaving your body. You will feel invigorated.
Take the time to relax during your worst days after chemo, don't stay in bed 24/7, but take several power naps combined with wake times of moving around and occupying your time.
Thursday, January 20, 2011
Chapter Eleven - Maureen and Kerry Make the Drive from MN to help
Chapter 11 Maureen and Kerry Make the Drive from Minnesota to Help
My oldest sister Kerry has always been like another Mother to me. As a child I looked up to her and went to her for advice on boys, life, or anything I had seen her experience in her own existence. She is the second child in our family, but the first and oldest girl out of 12 children, giving her a lot of responsibility growing up. Kerry has yet to marry or have kids of her own because she felt she had already done that, the kid's thing anyway. Maureen, my second oldest sister, is quite the opposite of Kerry. She has an easy going nature, much like my own. Laughter is an activity she relishes, along with staying on the go, staying young and having fun. Even though she is close to fifty her looks and actions show less years.
Kerry eats an organic diet and believes that the Macrobiotic diet is the way to heal me. Following the diet has not been an easy process. You have to cook foods in aluminum pans. Most ingredients need to be purchased from a health food store, which is not close by, and many of the foods are new to me. The thought of doing all of this is somewhat daunting. My cancer is overwhelming enough without throwing in a new way to cook and eat into it. Did I already say that the taste is less than desirable? I don’t like seaweed or Tofu and there seems to be an abundance of it on the diet. Obviously there are other foods on the eating plan, but not many are appetizing to me. Food and eating are and should be joyful experiences. I feel too miserable trying to stick to this food regimen, which tells me it is not the right fit for me. And I believe that finding the right fit is paramount in being able to stick to something.
During dinner Kerry and I got into a lightly heated discussion about the Macrobiotic Diet. I felt like I had to muster up the courage to tell her that I don't like it and I don't think I'll keep practicing it. She made a good argument as to why I should maintain my current eating path. Although her reasons made sense, they didn’t take into account that it doesn't satisfy me. She seemed upset with me, but only out of concern. She feels that if I go off the diet I'll hurt my chances for survival. I'm frightened as well, but also miserable and that has to count for something.
On the heels of our dinner discussion, My sister Paddy from California calls and offers to pay for me to go out East to a spa where they teach you to prepare Macrobiotic foods. While you are there you eat a Macrobiotic Diet and work on healing yourself through daily meals and rituals. The offer is quite generous and Paddy can afford it, but I can't accept such an extravagant gift. Everyone in our family knows that I'm a frugal person. They also feel that I'm less apt to spend money on myself even if it might save my life. My answer to that is, this cure is not a guarantee. If it were I certainly would spend the money.
At times I feel inundated with the cancer advice I get from everyone. Drink this tea, take these pills, meditate, eat this diet, the list goes on and on and on. As I’ve said before, when you get cancer, your loved ones get scared and they feel helpless. They only suggest remedies because they want to help.
Some people tend to be more aggressive about what they think you should do. Loved ones should realize that the sick person needs to make up their own mind as to how their illness is going to be handled and then respect that decision. I wish I knew what the right cure was. What do I need to do to stay alive? It would be nice to be sure, but it all seems to be a crap shoot. I believe my best bet is to make an informed sensible decision and stick with it if it feels good, and or, if it seems to work.
The last visit to the clinic for chemo was a few weeks ago so my energy level has been good during My sisters' visit. It usually takes me about 5 days to feel closer to normal after a treatment, which is administered every three weeks. Thankfully they did not have to accompany me to the clinic for a round. Kerry and Maureen stayed for a few more days. We traveled to the East side of Cleveland to purchase groceries from a health food store. Kerry made a wonderful vegetable and olive oil stew, not from the Macrobiotic Diet, so it was delicious. We all sat out on the deck every evening enjoying the garden and flowers, chatting and drinking wine, well, they were drinking wine. I drank water.
Even though Kerry and Maureen left the Catholic Church after high school because of the way nuns and priests dispensed cruelty toward kids, they agreed to keep me company at the next healing. On the way there, Kerry was talking about some sexually explicit goings on in the Catholic Church involving pedophilia until I finally said, "I'm pretty sure that we should not be trash talking the clergy right before we go into church for a healing." The mood was not the same as it was when Mom went with me. We sat through the mass and stayed after for the healing, but this time others went up to the front to be prayed over and a blanket healing was done for the rest of us in the pews. Maureen and Kerry were there to support me, but they did not necessarily believe in the process. This fact took away from my own belief. This healing proved to be less exhilarating than the first.
Advice
Follow your own instincts when it comes to a regimen for getting well.
Let loved one's research whatever they want for you, but realize that in the end the decision is yours and yours alone. It is your life.
If someone offers to pay for a stay in a spa to teach better habits, take them up on it if it feels good and right for you, if it doesn't than don't.
Have faith and confidence in the choices that you make for your own wellness, don't let others sway your faith.
My oldest sister Kerry has always been like another Mother to me. As a child I looked up to her and went to her for advice on boys, life, or anything I had seen her experience in her own existence. She is the second child in our family, but the first and oldest girl out of 12 children, giving her a lot of responsibility growing up. Kerry has yet to marry or have kids of her own because she felt she had already done that, the kid's thing anyway. Maureen, my second oldest sister, is quite the opposite of Kerry. She has an easy going nature, much like my own. Laughter is an activity she relishes, along with staying on the go, staying young and having fun. Even though she is close to fifty her looks and actions show less years.
Kerry eats an organic diet and believes that the Macrobiotic diet is the way to heal me. Following the diet has not been an easy process. You have to cook foods in aluminum pans. Most ingredients need to be purchased from a health food store, which is not close by, and many of the foods are new to me. The thought of doing all of this is somewhat daunting. My cancer is overwhelming enough without throwing in a new way to cook and eat into it. Did I already say that the taste is less than desirable? I don’t like seaweed or Tofu and there seems to be an abundance of it on the diet. Obviously there are other foods on the eating plan, but not many are appetizing to me. Food and eating are and should be joyful experiences. I feel too miserable trying to stick to this food regimen, which tells me it is not the right fit for me. And I believe that finding the right fit is paramount in being able to stick to something.
During dinner Kerry and I got into a lightly heated discussion about the Macrobiotic Diet. I felt like I had to muster up the courage to tell her that I don't like it and I don't think I'll keep practicing it. She made a good argument as to why I should maintain my current eating path. Although her reasons made sense, they didn’t take into account that it doesn't satisfy me. She seemed upset with me, but only out of concern. She feels that if I go off the diet I'll hurt my chances for survival. I'm frightened as well, but also miserable and that has to count for something.
On the heels of our dinner discussion, My sister Paddy from California calls and offers to pay for me to go out East to a spa where they teach you to prepare Macrobiotic foods. While you are there you eat a Macrobiotic Diet and work on healing yourself through daily meals and rituals. The offer is quite generous and Paddy can afford it, but I can't accept such an extravagant gift. Everyone in our family knows that I'm a frugal person. They also feel that I'm less apt to spend money on myself even if it might save my life. My answer to that is, this cure is not a guarantee. If it were I certainly would spend the money.
At times I feel inundated with the cancer advice I get from everyone. Drink this tea, take these pills, meditate, eat this diet, the list goes on and on and on. As I’ve said before, when you get cancer, your loved ones get scared and they feel helpless. They only suggest remedies because they want to help.
Some people tend to be more aggressive about what they think you should do. Loved ones should realize that the sick person needs to make up their own mind as to how their illness is going to be handled and then respect that decision. I wish I knew what the right cure was. What do I need to do to stay alive? It would be nice to be sure, but it all seems to be a crap shoot. I believe my best bet is to make an informed sensible decision and stick with it if it feels good, and or, if it seems to work.
The last visit to the clinic for chemo was a few weeks ago so my energy level has been good during My sisters' visit. It usually takes me about 5 days to feel closer to normal after a treatment, which is administered every three weeks. Thankfully they did not have to accompany me to the clinic for a round. Kerry and Maureen stayed for a few more days. We traveled to the East side of Cleveland to purchase groceries from a health food store. Kerry made a wonderful vegetable and olive oil stew, not from the Macrobiotic Diet, so it was delicious. We all sat out on the deck every evening enjoying the garden and flowers, chatting and drinking wine, well, they were drinking wine. I drank water.
Even though Kerry and Maureen left the Catholic Church after high school because of the way nuns and priests dispensed cruelty toward kids, they agreed to keep me company at the next healing. On the way there, Kerry was talking about some sexually explicit goings on in the Catholic Church involving pedophilia until I finally said, "I'm pretty sure that we should not be trash talking the clergy right before we go into church for a healing." The mood was not the same as it was when Mom went with me. We sat through the mass and stayed after for the healing, but this time others went up to the front to be prayed over and a blanket healing was done for the rest of us in the pews. Maureen and Kerry were there to support me, but they did not necessarily believe in the process. This fact took away from my own belief. This healing proved to be less exhilarating than the first.
Advice
Follow your own instincts when it comes to a regimen for getting well.
Let loved one's research whatever they want for you, but realize that in the end the decision is yours and yours alone. It is your life.
If someone offers to pay for a stay in a spa to teach better habits, take them up on it if it feels good and right for you, if it doesn't than don't.
Have faith and confidence in the choices that you make for your own wellness, don't let others sway your faith.
Wednesday, January 19, 2011
Chapter 10 - O'Brien's Descend Upon Ohio - Mom and Dad's visit
Chapter Ten - The O'Brien's descend Upon Ohio- Mom and Dad's visit Jul 30, 2003
July 30, 2003, Mom and Dad came out soon after I was released from the hospital. They wanted to be there while I went through my second round of chemo just in case there were any more complications. The Doctor decided to cut my chemo dose to 75%. I still got the mouth sores and the bad taste in my mouth, but it was much better. No hospital stays.
Having my parents with me was comforting. Mom is a worker. She gets up early and is ready to do anything that needs to be done. Dad is also up early and ready to go. If anyone needs a ride somewhere he is the man for the job. My Father also enjoys going down to the corner coffee shop to chat and drink coffee of course. He used to be in sales and likes to meet and talk with new people. Even though he is in his mid seventies he continues to hone the skill of innocent flirting. Dad could never resist chatting it up with an attractive woman.
In the case of my illness, I sense that Dad is putting up a good front for me. He is having a difficult time dealing with me being sick. We lost my younger brother Kevin about six years ago. He suffered from Manic Depression or as they call it these days, Bipolar disorder. Life was not easy for Kevin. In his late teens his symptoms started appearing. He was plagued with voices in his head and delusions. My parents committed him on a few occasions, but the institutions just kept him doped up on Lithium, so life felt numb and pointless to him. He would often say that he couldn’t feel anything so why be alive.
When he got out he refused to take his medication. Being around him was difficult because he acted crazy. He would scream out," no," to the voices in his head while listening to extremely loud blaring music on his head phones. He didn't often engage in conversation The only thing that he would interact with was food. My parents argued a lot about how to handle the situation. My Father insisted that he stay on the meds if he was going to live with them. My Mother wanted that as well but had a more challenging time enforcing tuff love. He opted to stop the drugs and basically moved to the streets. Many homeless people are just that because they have some sort of mental illness or suffer from addiction problems.
He frequented a shelter where he ate and slept in St. Paul Minnesota. My Mom’s solution to that was to donate money to the shelter. If she gave him the money he would not necessarily spend it on the things he needed to. Having a homeless sibling was difficult. Occasionally he would come to family functions, but wouldn't connect with anyone. Being around him was uncomfortable for me because of his behavior. I felt a great deal of guilt about that when he passed away.
He died alone sitting on a bench at the age of 38. He just stopped breathing. Along with obesity, he suffered from Sleep Apnea. When he talked about heaven, he was a born again Christian, he used to say that the streets and homes were made of gold. Everything in heaven in his mind was perfect and he couldn’t wait to get there. I know his life on earth was far more challenging than my own and I pray that his after life is as perfect as he envisioned.
While my parents are visiting I get a call from a friend, Peggy Urwin, one of the kindest, most Catholic, women I've ever met. Peggy has heard about an Irish nun in Parma Ohio called sister Monica who has been known to heal people. There is a mass held at the Parish she works at every Wednesday evening for the sick. Peggy would like to take me there. After some thought I agree to go with My Mom, who is also one of the most devout Catholics you'll ever meet, Dad was not interested in attending.
Mom and I jumped in the car, excited and somewhat apprehensive about our journey. Even though I was skeptical, I wanted to go for my Mom. She has such a strong faith in God. I figured what could it hurt? We arrived early to get a seat. There were people in wheel chairs, on crutches, all with visible ailments. To look at me you wouldn’t think I was sick, other than the fact that I didn’t have any hair.
The mass was a typical Catholic service. After mass the healing nun came out and talked to us. She laid the ground rules in a thick Irish brogue; I recognized this because my Dad is also from Ireland. She had a strict manner, and a funny sense of humor. She reminded me of the nuns I had in school growing up, except she was funny. A list of rules followed. The sickest people were asked to talk about their illness. My friend nudged me with encouragement to tell my story.
Describing my cancer for the crowd was not easy, but I was upbeat and matter of fact with just a few tears. The healer called me up. I would be the first to have the special attention of prayer. As I sat in front of the congregation the nun and her counterparts laid their hands on my abdomen, head and shoulders and began to pray. I cried, my Mom cried and my friend cried. There was a lot of positive energy flowing around us. It was exhilarating, even for a skeptic. After the service a little Irish man ran up to me and told me I had a great attitude. He assured me I would need that to heal. He also stated that for prayer and healing to work I would truly have to believe in the possibility and continue to come back until I was cured.
That evening I couldn’t sleep. There was so much energy coursing through my body. Would the healing help me? It certainly couldn’t hurt. The Irish gentlemen hit the nail on the head when he said that one has to truly believe in the possibility that prayer can heal an individual. As I’ve said before. The mind is a powerful tool. The belief in something can become a person’s truth and reality. I wish I could harness the power of my mind to heal my body. The sun is coming up and I finally doze off.
The next day we were all buzzing about the healing. Mom was happy because she has an intense belief in the power of God and prayer. Her father was a Methodist Minister. And now she is the best converted Catholic you’ll ever meet. She seemed excited that I sought the help of religion to help myself get better. My Dad was amused by the stories and antics of the Irish nun and her counterparts. Both my parents were relieved to see that I would try any means necessary, within reason, to stay on this earth a little longer.
August 6, 2003, Mom and Dad are leaving today. The visit has been uplifting and meaningful. I’m sorry to see them leave, but they need to get back and we need a few days of rest before our next set of visitors come. My two oldest sisters are coming out in four days. They were here when I went through my first chemo therapy after my breast cancer. The kids are excited. The last time these particular Aunts were here they took them shopping and to the beach. The girls are looking forward to some similar outings.
Advice
If you are an adult daughter or son with an illness, let your parents help you by any means possible. They need to feel needed. Being the parents of a terminally ill child, no matter what age, is heart wrenching. Let them feel productive with their assistance.
People will research all kinds of cures for you. Why not try something you can believe in if it isn't too costly, or crazy, or above all, harmful.
Believe in the power of possibilities.
July 30, 2003, Mom and Dad came out soon after I was released from the hospital. They wanted to be there while I went through my second round of chemo just in case there were any more complications. The Doctor decided to cut my chemo dose to 75%. I still got the mouth sores and the bad taste in my mouth, but it was much better. No hospital stays.
Having my parents with me was comforting. Mom is a worker. She gets up early and is ready to do anything that needs to be done. Dad is also up early and ready to go. If anyone needs a ride somewhere he is the man for the job. My Father also enjoys going down to the corner coffee shop to chat and drink coffee of course. He used to be in sales and likes to meet and talk with new people. Even though he is in his mid seventies he continues to hone the skill of innocent flirting. Dad could never resist chatting it up with an attractive woman.
In the case of my illness, I sense that Dad is putting up a good front for me. He is having a difficult time dealing with me being sick. We lost my younger brother Kevin about six years ago. He suffered from Manic Depression or as they call it these days, Bipolar disorder. Life was not easy for Kevin. In his late teens his symptoms started appearing. He was plagued with voices in his head and delusions. My parents committed him on a few occasions, but the institutions just kept him doped up on Lithium, so life felt numb and pointless to him. He would often say that he couldn’t feel anything so why be alive.
When he got out he refused to take his medication. Being around him was difficult because he acted crazy. He would scream out," no," to the voices in his head while listening to extremely loud blaring music on his head phones. He didn't often engage in conversation The only thing that he would interact with was food. My parents argued a lot about how to handle the situation. My Father insisted that he stay on the meds if he was going to live with them. My Mother wanted that as well but had a more challenging time enforcing tuff love. He opted to stop the drugs and basically moved to the streets. Many homeless people are just that because they have some sort of mental illness or suffer from addiction problems.
He frequented a shelter where he ate and slept in St. Paul Minnesota. My Mom’s solution to that was to donate money to the shelter. If she gave him the money he would not necessarily spend it on the things he needed to. Having a homeless sibling was difficult. Occasionally he would come to family functions, but wouldn't connect with anyone. Being around him was uncomfortable for me because of his behavior. I felt a great deal of guilt about that when he passed away.
He died alone sitting on a bench at the age of 38. He just stopped breathing. Along with obesity, he suffered from Sleep Apnea. When he talked about heaven, he was a born again Christian, he used to say that the streets and homes were made of gold. Everything in heaven in his mind was perfect and he couldn’t wait to get there. I know his life on earth was far more challenging than my own and I pray that his after life is as perfect as he envisioned.
While my parents are visiting I get a call from a friend, Peggy Urwin, one of the kindest, most Catholic, women I've ever met. Peggy has heard about an Irish nun in Parma Ohio called sister Monica who has been known to heal people. There is a mass held at the Parish she works at every Wednesday evening for the sick. Peggy would like to take me there. After some thought I agree to go with My Mom, who is also one of the most devout Catholics you'll ever meet, Dad was not interested in attending.
Mom and I jumped in the car, excited and somewhat apprehensive about our journey. Even though I was skeptical, I wanted to go for my Mom. She has such a strong faith in God. I figured what could it hurt? We arrived early to get a seat. There were people in wheel chairs, on crutches, all with visible ailments. To look at me you wouldn’t think I was sick, other than the fact that I didn’t have any hair.
The mass was a typical Catholic service. After mass the healing nun came out and talked to us. She laid the ground rules in a thick Irish brogue; I recognized this because my Dad is also from Ireland. She had a strict manner, and a funny sense of humor. She reminded me of the nuns I had in school growing up, except she was funny. A list of rules followed. The sickest people were asked to talk about their illness. My friend nudged me with encouragement to tell my story.
Describing my cancer for the crowd was not easy, but I was upbeat and matter of fact with just a few tears. The healer called me up. I would be the first to have the special attention of prayer. As I sat in front of the congregation the nun and her counterparts laid their hands on my abdomen, head and shoulders and began to pray. I cried, my Mom cried and my friend cried. There was a lot of positive energy flowing around us. It was exhilarating, even for a skeptic. After the service a little Irish man ran up to me and told me I had a great attitude. He assured me I would need that to heal. He also stated that for prayer and healing to work I would truly have to believe in the possibility and continue to come back until I was cured.
That evening I couldn’t sleep. There was so much energy coursing through my body. Would the healing help me? It certainly couldn’t hurt. The Irish gentlemen hit the nail on the head when he said that one has to truly believe in the possibility that prayer can heal an individual. As I’ve said before. The mind is a powerful tool. The belief in something can become a person’s truth and reality. I wish I could harness the power of my mind to heal my body. The sun is coming up and I finally doze off.
The next day we were all buzzing about the healing. Mom was happy because she has an intense belief in the power of God and prayer. Her father was a Methodist Minister. And now she is the best converted Catholic you’ll ever meet. She seemed excited that I sought the help of religion to help myself get better. My Dad was amused by the stories and antics of the Irish nun and her counterparts. Both my parents were relieved to see that I would try any means necessary, within reason, to stay on this earth a little longer.
August 6, 2003, Mom and Dad are leaving today. The visit has been uplifting and meaningful. I’m sorry to see them leave, but they need to get back and we need a few days of rest before our next set of visitors come. My two oldest sisters are coming out in four days. They were here when I went through my first chemo therapy after my breast cancer. The kids are excited. The last time these particular Aunts were here they took them shopping and to the beach. The girls are looking forward to some similar outings.
Advice
If you are an adult daughter or son with an illness, let your parents help you by any means possible. They need to feel needed. Being the parents of a terminally ill child, no matter what age, is heart wrenching. Let them feel productive with their assistance.
People will research all kinds of cures for you. Why not try something you can believe in if it isn't too costly, or crazy, or above all, harmful.
Believe in the power of possibilities.
Tuesday, January 18, 2011
Chapter Nine - Original Breast Cancer
CHAPTER NINE ORIGINAL BREAST CANCER -- FEB 2000
In the fall of 1997 calcifications (the presence of healing in the breast tissue) were found on a yearly mammogram. Apparently calcifications are not necessarily a sign of cancer so the Dr. wasn't concerned enough to get a biopsy, but she wanted to keep a closer watch on the tissue so I began having regular mammograms every six months. In July 1999, I complained to my Gynecologist about a lump in the same area where they were seeing the calcifications. After a physical exam, she assured me that it was "definitely not" a lump. As a matter of fact she said it three times, so I was somewhat relieved. I say "somewhat relieved" because I had this nagging feeling that something was wrong. I was so nervous about the lump I "definitely" didn't have that I started doing breast exams every day. In the shower I would use my finger tips and feel around the breast in a circular motion going slowly over the portion that I thought was a lump. I could certainly feel something.
The following February 2000 I went in for my next mammogram. My nipple was caving in. The Technician asked me if there had been any changes since my last test. I told her that my nipple was deformed but my doctor assured me that I didn't have a lump. She took more films than usual that day and went in and out of the room several times. This made me suspicious. When we finished up, she told me that my doctor would call me with the results.
At 7:30 the next morning I got a call from the doctor's office explaining that they got the results of my mammogram. She said, "We urge you to seek a surgeon immediately." I was stunned. I started firing off questions, a pretty logical thing to do after getting that kind of news, but the woman I was talking to wasn't the doctor so she didn't have any answers for me. I requested a call from the doctor which came six hours later. The bedside manner of this physician was curt. She had no empathy or sympathy in her voice; she was just matter of fact.
As I rattled off my questions, her answers to me were; "I do not know, that is why I'm referring you to a surgeon." Perhaps she was completely in the right by her response to my questions, but she was just so cold about everything that I was left feeling dazed. I felt she could have done a better job in dealing with my fears. That was the last time I would ever use a drive through physician--one of those doctors who are in such a hurry they can't be bothered to answer your questions. They leave you sitting in the exam room for an hour, breeze in without an apology for wasting your time and act imposed upon when you need additional information.
I sought out the surgeon my doctor referred me to, he looked at the films and said he wasn't sure what it was, but it should be biopsied. Unfortunately he was so successful and busy that he couldn't do the biopsy for a month. I knew I couldn't wait a month, so I went to the Cleveland Clinic Breast Center.
The Clinic scheduled me for an appointment the next day. When the surgeon looked at the films he said, "I'll be shocked if you don't have cancer." They did the biopsy a few hours later. The Radiologist performed the biopsy and concurred with the surgeon. The mass probably was cancer. When I received the official news that it was, in fact, cancer I cried and I was frightened. To my advantage, when my mother was 46 she developed stage four breast cancer, survived and never got it back again. She is now 77 years old. Because my mother seemed to sail through stage four breast cancer and chemo, I suspect I was less nervous than someone else in the same position might have been.
The diagnosis came in February 2000. I definitely had cancer, they were not sure of the stage, they would know more after the surgery, which would be a mastectomy. Within a few weeks I met with an oncology surgeon and a plastic surgeon. They were absolutely wonderful. All the doctors at this clinic were. They were kind and caring and generous with their time. They spent so much time in fact, I thought to myself, "Why are they staying in the exam room so long? I must be dying." But I was wrong. They were just good medical professionals, who wanted to make sure that I was clear about my disease. I didn't feel rushed or pressured or like a number who wasn't significant.
Two weeks later I had a mastectomy on the left side as well as reconstruction surgery, a mastectomy is an operation where they remove the breast and lymph nodes containing cancer. Reconstruction is rebuilding the breast. Some people do theses surgeries separately. I decided to have everything done in one surgery so I didn't have to go back into the hospital for a second operation. It was a long surgery using two surgeons, one to remove the breast and lymph nodes and a plastic surgeon to make the new breast.
The reconstructive procedure I had is called a tram. The surgeons use the fat from the abdomen as well as a portion of the rectus abdominus muscle, which is one of the main abdomen muscles running from the sternum to the pelvis. To reconstruct the new breast, the fat is molded into a breast and a portion of your ab is cut and used to hold the fat in place. Unfortunately, because I had been religious about fitness, I was in good shape and thin when I had the surgery so there wasn't enough fat in the abdomen to make the breast.
The surgeon made me aware of the possibility that an implant might have to be used if there wasn't enough fat. I opted for a saline implant, if that were the case, one that would be the same size as my original breast. When they put an implant in on one side insurance pays for one on the other side. This is so you don't have one perky breast and one that's not so perky. So, now I had two breasts standing at attention. The mastectomy side looked good, or at least that is what every doctor said when they looked at it. And, they looked at it every day. I, however, called it my Frankenstein boob. The new breast had a good shape but it had several stitches across the front and I couldn't feel a thing when it was touched. Reconstructed breasts have no feeling left. After I healed from the surgery the doctor made a nipple and tattooed it brown so it looked more realistic.
The surgery revealed that my cancer was at a stage 2b. This is almost a stage three and there are just 5 stages of severity with disease. I had three positive lymph nodes. Recovery time from a tram and mastectomy is typically about six weeks, but my healing time was shortened because I was in good physical condition. This is one of the many reason I love exercise. It not only makes you feel and look better, it helps your internal systems work better. Why do so many people object to doing it?
Chemotherapy started the following summer. This would be my first experience with chemo so I was frightened. I was unsure of how I would handle the drug. I was given so much information about the possible negative side effects that my mind traveled to the worst case scenarios. A prospective chemo patient is informed of every possible side effect the drug can offer. This is so you know what to expect, just in case you may have one of them. Chemo side effects range from hair loss, mouth sores, nausea, vomiting, neuropathy and more. It's like those drug commercials you see on television. They tout a drug for its healing powers, but they don't want to get sued so they have to tell you about known negative side effects. This drug can help you but you may have anal leakage or impotency as a side effect.
Initially, exercise was not part of my chemo regimen because I didn't think I would have the energy, both mentally and physically, to do it. Eventually, I persuaded myself to do some walking. At the time, because it was my first experience with this type of therapy, I wasn't sure how my body would handle physical activity. I just wanted to take it easy.
My initial chemo wasn't awful. I started losing my hair about three weeks after the first dose. I decided to take the financial plunge and have a real hair wig made to the tune of $1,000. I was appalled at the cost, but vain enough to spend the money. My youngest daughter Frankie, who was 5 at the time, accompanied me to the wig salon. The stylist turned my chair away from the mirror so I was staring directly at Frankie and proceeded to shave my head. Frankie giggled and gasped and made funny faces at me the entire time until I was completely bald. She stopped and became quiet until she blurted out, "You look just like Grandpa O'Brien with a burst of laughter." I turned around and had to agree, I did look like Dad, just a younger and better looking version.
My other side effects were mouth sores, dry mouth, general body weakness and nausea for the first few days. Food tasted terrible to me. Drinking soda water and eating saltines helped immensely. I didn't feel like eating, but the less I ate the worse my nausea got. Crackers and sparkling water did the trick of curbing the stomach issues.
Five, eight and ten were the ages of my daughters during my first experience with cancer. They were scared, and used their voice of tears to express their fears about my new look. I explained to them that it was just the medicine that made me sick, not the cancer. Comfort settled in while listening to stories about their Grandmother O'Brien's successful battle with cancer, so I told it to them often.
My Mom and Dad came out to help out with the kids after my surgery which was reassuring to all of us. Mom had been through chemo and a mastectomy, this coupled with the fact that she is a retired nurse brought calm to the household. I was taking pain pills to cope with the discomfort from the surgery which made me constipated. My Mother, bless her heart, offered to dig out the poop for me. My answer was "I love you Mom and obviously you love me if you are willing to go that far, but not in a million years would I have you perform that task." We then roared with laughter.
Mike was by my side for every Dr. and chemo appointment. His fear manifested itself by staying busy with not only his work, but the many tasks I was too tired to do around the house. Cooking was not his forte, so our friends, family and neighbors were kind enough to prepare meals on chemo days. Illness brings out the best in your supporters.
By Thanksgiving 2000 I was finished with chemo. Leaving this part of my life behind was absolute ecstasy. My hair was growing back. And most importantly, my taste buds started working again, food isn't worth eating if you can't taste it. The doctor gave me a clean bill of health. Life quickly streamed into a regular routine except for the fact that over the next year I would have to visit the clinic every four months to get a physical and lab work to see if I remained cancer free. Every time I walked back into the clinic I was reminded of the cancer ordeal, but as soon as I left those thoughts were gone.
Each visit to the doctor was positive, and I remained cancer free for a few years. After the first year, my original oncologist whom I loved, moved to another state so I was assigned to a new one. The new oncologist was a nice guy, and we had a decent rapport. I was now down to visiting the clinic every six months since it was the second year after my original surgery. Then, in the fall of 2002 I started to lose weight and feel a little tired. I made a special appointment. I wanted to make sure everything was okay.
My oncologist performed the usual physical exam, checking the breast and the rest of the body for lumps. Many questions were asked about what I was eating, my activity level, and my stress level. At the time I was taking college courses to complete my degree, coaching volleyball, running a household and eating about 2000 calories a day. He attributed my weight loss and lack of energy to a busy lifestyle, which left me reasonably content, though once again I had a nagging sense in the back of my head that there was more to it.
Six months later, May of 2003, I saw my oncologist again I still had the same symptoms. I was tired and thinner than normal. We discussed my concerns. At this time my school work included a stressful internship, stressful because it wasn't a good fit between me and the employer. I sensed that there was cancer somewhere in my body which I conveyed to him, but he discounted my concerns because I didn't have any obvious pains or symptoms and I was under more stress than usual. A physical exam was performed and everything was fine. There was not a blood test taken because too many patients were complaining about overkill in that area. Patients were getting blood draws at their regular physicians as well as their oncologists so the clinic pulled back on that procedure. My oncologist, however, was my one shop stop, so I wanted a blood draw at my future visits. I left feeling a frustrated and wished that I felt better. Three to four weeks later I was diagnosed with stage four breast cancer which had metastasized to the liver. You might be asking yourself how this could happen to a person twice--being misdiagnosed by two different doctors. While I believe that the doctors may have dropped the ball, so to speak, I also feel I shoulder some of the blame. I should have trusted my instincts.
Advice
Speak up to your physician if you feel there is something wrong.
Trust your instincts.
Get to know your body.
Don't be intimidated by your Doctor, they make mistakes too.
Be proactive in your own care.
Don't be afraid to push for a test if you feel there is something wrong. And don't be afraid to stand up to someone when your health is on the line.
Get a second opinion if need be.
In the fall of 1997 calcifications (the presence of healing in the breast tissue) were found on a yearly mammogram. Apparently calcifications are not necessarily a sign of cancer so the Dr. wasn't concerned enough to get a biopsy, but she wanted to keep a closer watch on the tissue so I began having regular mammograms every six months. In July 1999, I complained to my Gynecologist about a lump in the same area where they were seeing the calcifications. After a physical exam, she assured me that it was "definitely not" a lump. As a matter of fact she said it three times, so I was somewhat relieved. I say "somewhat relieved" because I had this nagging feeling that something was wrong. I was so nervous about the lump I "definitely" didn't have that I started doing breast exams every day. In the shower I would use my finger tips and feel around the breast in a circular motion going slowly over the portion that I thought was a lump. I could certainly feel something.
The following February 2000 I went in for my next mammogram. My nipple was caving in. The Technician asked me if there had been any changes since my last test. I told her that my nipple was deformed but my doctor assured me that I didn't have a lump. She took more films than usual that day and went in and out of the room several times. This made me suspicious. When we finished up, she told me that my doctor would call me with the results.
At 7:30 the next morning I got a call from the doctor's office explaining that they got the results of my mammogram. She said, "We urge you to seek a surgeon immediately." I was stunned. I started firing off questions, a pretty logical thing to do after getting that kind of news, but the woman I was talking to wasn't the doctor so she didn't have any answers for me. I requested a call from the doctor which came six hours later. The bedside manner of this physician was curt. She had no empathy or sympathy in her voice; she was just matter of fact.
As I rattled off my questions, her answers to me were; "I do not know, that is why I'm referring you to a surgeon." Perhaps she was completely in the right by her response to my questions, but she was just so cold about everything that I was left feeling dazed. I felt she could have done a better job in dealing with my fears. That was the last time I would ever use a drive through physician--one of those doctors who are in such a hurry they can't be bothered to answer your questions. They leave you sitting in the exam room for an hour, breeze in without an apology for wasting your time and act imposed upon when you need additional information.
I sought out the surgeon my doctor referred me to, he looked at the films and said he wasn't sure what it was, but it should be biopsied. Unfortunately he was so successful and busy that he couldn't do the biopsy for a month. I knew I couldn't wait a month, so I went to the Cleveland Clinic Breast Center.
The Clinic scheduled me for an appointment the next day. When the surgeon looked at the films he said, "I'll be shocked if you don't have cancer." They did the biopsy a few hours later. The Radiologist performed the biopsy and concurred with the surgeon. The mass probably was cancer. When I received the official news that it was, in fact, cancer I cried and I was frightened. To my advantage, when my mother was 46 she developed stage four breast cancer, survived and never got it back again. She is now 77 years old. Because my mother seemed to sail through stage four breast cancer and chemo, I suspect I was less nervous than someone else in the same position might have been.
The diagnosis came in February 2000. I definitely had cancer, they were not sure of the stage, they would know more after the surgery, which would be a mastectomy. Within a few weeks I met with an oncology surgeon and a plastic surgeon. They were absolutely wonderful. All the doctors at this clinic were. They were kind and caring and generous with their time. They spent so much time in fact, I thought to myself, "Why are they staying in the exam room so long? I must be dying." But I was wrong. They were just good medical professionals, who wanted to make sure that I was clear about my disease. I didn't feel rushed or pressured or like a number who wasn't significant.
Two weeks later I had a mastectomy on the left side as well as reconstruction surgery, a mastectomy is an operation where they remove the breast and lymph nodes containing cancer. Reconstruction is rebuilding the breast. Some people do theses surgeries separately. I decided to have everything done in one surgery so I didn't have to go back into the hospital for a second operation. It was a long surgery using two surgeons, one to remove the breast and lymph nodes and a plastic surgeon to make the new breast.
The reconstructive procedure I had is called a tram. The surgeons use the fat from the abdomen as well as a portion of the rectus abdominus muscle, which is one of the main abdomen muscles running from the sternum to the pelvis. To reconstruct the new breast, the fat is molded into a breast and a portion of your ab is cut and used to hold the fat in place. Unfortunately, because I had been religious about fitness, I was in good shape and thin when I had the surgery so there wasn't enough fat in the abdomen to make the breast.
The surgeon made me aware of the possibility that an implant might have to be used if there wasn't enough fat. I opted for a saline implant, if that were the case, one that would be the same size as my original breast. When they put an implant in on one side insurance pays for one on the other side. This is so you don't have one perky breast and one that's not so perky. So, now I had two breasts standing at attention. The mastectomy side looked good, or at least that is what every doctor said when they looked at it. And, they looked at it every day. I, however, called it my Frankenstein boob. The new breast had a good shape but it had several stitches across the front and I couldn't feel a thing when it was touched. Reconstructed breasts have no feeling left. After I healed from the surgery the doctor made a nipple and tattooed it brown so it looked more realistic.
The surgery revealed that my cancer was at a stage 2b. This is almost a stage three and there are just 5 stages of severity with disease. I had three positive lymph nodes. Recovery time from a tram and mastectomy is typically about six weeks, but my healing time was shortened because I was in good physical condition. This is one of the many reason I love exercise. It not only makes you feel and look better, it helps your internal systems work better. Why do so many people object to doing it?
Chemotherapy started the following summer. This would be my first experience with chemo so I was frightened. I was unsure of how I would handle the drug. I was given so much information about the possible negative side effects that my mind traveled to the worst case scenarios. A prospective chemo patient is informed of every possible side effect the drug can offer. This is so you know what to expect, just in case you may have one of them. Chemo side effects range from hair loss, mouth sores, nausea, vomiting, neuropathy and more. It's like those drug commercials you see on television. They tout a drug for its healing powers, but they don't want to get sued so they have to tell you about known negative side effects. This drug can help you but you may have anal leakage or impotency as a side effect.
Initially, exercise was not part of my chemo regimen because I didn't think I would have the energy, both mentally and physically, to do it. Eventually, I persuaded myself to do some walking. At the time, because it was my first experience with this type of therapy, I wasn't sure how my body would handle physical activity. I just wanted to take it easy.
My initial chemo wasn't awful. I started losing my hair about three weeks after the first dose. I decided to take the financial plunge and have a real hair wig made to the tune of $1,000. I was appalled at the cost, but vain enough to spend the money. My youngest daughter Frankie, who was 5 at the time, accompanied me to the wig salon. The stylist turned my chair away from the mirror so I was staring directly at Frankie and proceeded to shave my head. Frankie giggled and gasped and made funny faces at me the entire time until I was completely bald. She stopped and became quiet until she blurted out, "You look just like Grandpa O'Brien with a burst of laughter." I turned around and had to agree, I did look like Dad, just a younger and better looking version.
My other side effects were mouth sores, dry mouth, general body weakness and nausea for the first few days. Food tasted terrible to me. Drinking soda water and eating saltines helped immensely. I didn't feel like eating, but the less I ate the worse my nausea got. Crackers and sparkling water did the trick of curbing the stomach issues.
Five, eight and ten were the ages of my daughters during my first experience with cancer. They were scared, and used their voice of tears to express their fears about my new look. I explained to them that it was just the medicine that made me sick, not the cancer. Comfort settled in while listening to stories about their Grandmother O'Brien's successful battle with cancer, so I told it to them often.
My Mom and Dad came out to help out with the kids after my surgery which was reassuring to all of us. Mom had been through chemo and a mastectomy, this coupled with the fact that she is a retired nurse brought calm to the household. I was taking pain pills to cope with the discomfort from the surgery which made me constipated. My Mother, bless her heart, offered to dig out the poop for me. My answer was "I love you Mom and obviously you love me if you are willing to go that far, but not in a million years would I have you perform that task." We then roared with laughter.
Mike was by my side for every Dr. and chemo appointment. His fear manifested itself by staying busy with not only his work, but the many tasks I was too tired to do around the house. Cooking was not his forte, so our friends, family and neighbors were kind enough to prepare meals on chemo days. Illness brings out the best in your supporters.
By Thanksgiving 2000 I was finished with chemo. Leaving this part of my life behind was absolute ecstasy. My hair was growing back. And most importantly, my taste buds started working again, food isn't worth eating if you can't taste it. The doctor gave me a clean bill of health. Life quickly streamed into a regular routine except for the fact that over the next year I would have to visit the clinic every four months to get a physical and lab work to see if I remained cancer free. Every time I walked back into the clinic I was reminded of the cancer ordeal, but as soon as I left those thoughts were gone.
Each visit to the doctor was positive, and I remained cancer free for a few years. After the first year, my original oncologist whom I loved, moved to another state so I was assigned to a new one. The new oncologist was a nice guy, and we had a decent rapport. I was now down to visiting the clinic every six months since it was the second year after my original surgery. Then, in the fall of 2002 I started to lose weight and feel a little tired. I made a special appointment. I wanted to make sure everything was okay.
My oncologist performed the usual physical exam, checking the breast and the rest of the body for lumps. Many questions were asked about what I was eating, my activity level, and my stress level. At the time I was taking college courses to complete my degree, coaching volleyball, running a household and eating about 2000 calories a day. He attributed my weight loss and lack of energy to a busy lifestyle, which left me reasonably content, though once again I had a nagging sense in the back of my head that there was more to it.
Six months later, May of 2003, I saw my oncologist again I still had the same symptoms. I was tired and thinner than normal. We discussed my concerns. At this time my school work included a stressful internship, stressful because it wasn't a good fit between me and the employer. I sensed that there was cancer somewhere in my body which I conveyed to him, but he discounted my concerns because I didn't have any obvious pains or symptoms and I was under more stress than usual. A physical exam was performed and everything was fine. There was not a blood test taken because too many patients were complaining about overkill in that area. Patients were getting blood draws at their regular physicians as well as their oncologists so the clinic pulled back on that procedure. My oncologist, however, was my one shop stop, so I wanted a blood draw at my future visits. I left feeling a frustrated and wished that I felt better. Three to four weeks later I was diagnosed with stage four breast cancer which had metastasized to the liver. You might be asking yourself how this could happen to a person twice--being misdiagnosed by two different doctors. While I believe that the doctors may have dropped the ball, so to speak, I also feel I shoulder some of the blame. I should have trusted my instincts.
Advice
Speak up to your physician if you feel there is something wrong.
Trust your instincts.
Get to know your body.
Don't be intimidated by your Doctor, they make mistakes too.
Be proactive in your own care.
Don't be afraid to push for a test if you feel there is something wrong. And don't be afraid to stand up to someone when your health is on the line.
Get a second opinion if need be.
Monday, January 17, 2011
Chapter Eight - Leaving the Hospital/creating a zen garden
CHAPTER EIGHT - Leaving the Hospital/Creating a Zen Garden - July 2003
As far as hospitals go, this one is not too bad. I am on a new floor, one specifically for cancer patients, so the staff is used to dealing with the type of disease. The Nurses and technicians are efficient with their care, as well as kind and compassionate. The view is one of the Clinic's campus, quite expansive, and pretty at the same time. With all that going for them, a hospital is a hospital. They are cold, sterile and somewhat depressing. You sleep in two hour increments all day and night long because the staff is coming in checking on you, giving you meds, taking temperatures and asking you questions. Your options are to lie there and read, or lie there and watch television, or sleep. If you are not immobile, or hooked up to too many IV's, you can get up and roam the hallways. I am an active person so I opt for getting up and walking as often as possible. I feel it makes the healing process faster, it certainly makes me feel better mentally as well as physically. Even though I am sick I get up and move whenever possible.
My fever was finally under control after a week in the hospital, my port was installed and I was ready to go home. If I could do cartwheels down the hall and end in a victory motion with both arms fully extended upward, giving the Nixon peace sign with both hands I would. The stay in the hospital took a toll on me and my family. Everyone was happy to have me coming home, but I looked thin and unhealthy so I thought we needed to do something to jump start our joy.
I remembered how wonderful I felt relaxing on my sister Angie's deck, basking in the beauty of the flowers and plants. The energy was positive and uplifting, perfect for reflection, prayer or tranquil moments. Mike, the kids and I decided to create our own soothing environment on our own deck. Our backyard backs up to a forest and every Spring Mike works diligently planting flowers along the edge of the woods creating an array of color that looks beautiful just by being there. The family wanted to bring some of that color through flowers and plants onto the deck.
Mike went to one of his favorite places, Home Depot, to purchase plants, dirt, flowers, a small portable waterfall which could be hung on the deck, paint and pots. In true Mike fashion, he bought too much, he likes to go overboard when accomplishing a task. The girls painted the red clay pots in bold, beautiful colors to make them bright and cheerful. When everyone's hard work was done our deck was transformed into a meditation getaway. It was wonderful. Mike, as always, ended up doing most of the work, digging and planting well into the evening hours. As I said, he takes an idea and just runs with it to an extreme level. At times this quality drives me crazy, but I also appreciate him for it.
As the rest of my family slept , excitement woke me early the next day, our tranquil deck awaited. I came down to the kitchen and made myself a cup of green tea. It is supposed to contain many antioxidants which are positive properties for the immune system, the healing structures of the body. The rays of the sun were just starting to peek over the trees. The birds were chirping and flying around. Nature was waking up, it seemed, just for my enjoyment.
Morning, before the rest of the world wakes up is my favorite time of day. It is a fresh start, the promise of a new beginning, the choices we have are endless. I took a long deep breath to bring in the smell of the air and trees and flowers, it was fresh and sweet and full of possibilities. This action made me feel strong. I visualized this breath bringing healthy life into my body, picturing myself well and vibrant. I prayed to God to let me live, to heal me, or show me the way to heal myself. After sitting there for an hour or so thinking over my plight, I felt renewed and ready to take on the day and the journey that lie ahead for me, convincing myself that I could do this.
This would be my morning ritual from here on out when weather provided. If I couldn't go outside I would find a room or space where I could create the same calm, relaxed, positive feeling.
Advice
If you are well enough and the staff has okayed it, get up and move in the hospital, even if it is just a few steps. Try to make small progressions each time you attempt activity.
When you get home, continue moving in a safe manner, walk around the house or your block if you feel up to it.
Create a comforting place or room where you are free of stress to meditate, pray, or just relax in. Try to visualize yourself healthy and strong.
As far as hospitals go, this one is not too bad. I am on a new floor, one specifically for cancer patients, so the staff is used to dealing with the type of disease. The Nurses and technicians are efficient with their care, as well as kind and compassionate. The view is one of the Clinic's campus, quite expansive, and pretty at the same time. With all that going for them, a hospital is a hospital. They are cold, sterile and somewhat depressing. You sleep in two hour increments all day and night long because the staff is coming in checking on you, giving you meds, taking temperatures and asking you questions. Your options are to lie there and read, or lie there and watch television, or sleep. If you are not immobile, or hooked up to too many IV's, you can get up and roam the hallways. I am an active person so I opt for getting up and walking as often as possible. I feel it makes the healing process faster, it certainly makes me feel better mentally as well as physically. Even though I am sick I get up and move whenever possible.
My fever was finally under control after a week in the hospital, my port was installed and I was ready to go home. If I could do cartwheels down the hall and end in a victory motion with both arms fully extended upward, giving the Nixon peace sign with both hands I would. The stay in the hospital took a toll on me and my family. Everyone was happy to have me coming home, but I looked thin and unhealthy so I thought we needed to do something to jump start our joy.
I remembered how wonderful I felt relaxing on my sister Angie's deck, basking in the beauty of the flowers and plants. The energy was positive and uplifting, perfect for reflection, prayer or tranquil moments. Mike, the kids and I decided to create our own soothing environment on our own deck. Our backyard backs up to a forest and every Spring Mike works diligently planting flowers along the edge of the woods creating an array of color that looks beautiful just by being there. The family wanted to bring some of that color through flowers and plants onto the deck.
Mike went to one of his favorite places, Home Depot, to purchase plants, dirt, flowers, a small portable waterfall which could be hung on the deck, paint and pots. In true Mike fashion, he bought too much, he likes to go overboard when accomplishing a task. The girls painted the red clay pots in bold, beautiful colors to make them bright and cheerful. When everyone's hard work was done our deck was transformed into a meditation getaway. It was wonderful. Mike, as always, ended up doing most of the work, digging and planting well into the evening hours. As I said, he takes an idea and just runs with it to an extreme level. At times this quality drives me crazy, but I also appreciate him for it.
As the rest of my family slept , excitement woke me early the next day, our tranquil deck awaited. I came down to the kitchen and made myself a cup of green tea. It is supposed to contain many antioxidants which are positive properties for the immune system, the healing structures of the body. The rays of the sun were just starting to peek over the trees. The birds were chirping and flying around. Nature was waking up, it seemed, just for my enjoyment.
Morning, before the rest of the world wakes up is my favorite time of day. It is a fresh start, the promise of a new beginning, the choices we have are endless. I took a long deep breath to bring in the smell of the air and trees and flowers, it was fresh and sweet and full of possibilities. This action made me feel strong. I visualized this breath bringing healthy life into my body, picturing myself well and vibrant. I prayed to God to let me live, to heal me, or show me the way to heal myself. After sitting there for an hour or so thinking over my plight, I felt renewed and ready to take on the day and the journey that lie ahead for me, convincing myself that I could do this.
This would be my morning ritual from here on out when weather provided. If I couldn't go outside I would find a room or space where I could create the same calm, relaxed, positive feeling.
Advice
If you are well enough and the staff has okayed it, get up and move in the hospital, even if it is just a few steps. Try to make small progressions each time you attempt activity.
When you get home, continue moving in a safe manner, walk around the house or your block if you feel up to it.
Create a comforting place or room where you are free of stress to meditate, pray, or just relax in. Try to visualize yourself healthy and strong.
Sunday, January 16, 2011
Chapter Seven - New Oncologist/Diagnosis Treatment June 2003
CHAPTER SEVEN - ONCOLOGIST/DIAGNOSIS/TREATMENT PLAN
A scheduled visit to a new oncologist, whom I'll call Dr. B, awaited me. Dr. B was the head of clinical trials so I was eager and excited to meet him. I knew when he walked into the room that I liked him. He was a gangly 6'4" man with kind blue eyes and premature grey hair. He reminded me of the smart, tall, lanky kid in high school who was a genius, but wouldn't come into his own until college.
As we discussed my situation and options, we soon found out that I was not eligible for any clinical trials. Many clinical trials are quite specific about who is and who is not eligible. There were only a few trials available and I hadn't failed on enough previous drugs to qualify. I would be put on a regimen of Taxateer and Zaloda. I didn't know much about them other than they were like any other chemo drug, but one of them was oral and one was fed through the veins.
Surgery was out as an option as well. Even though the liver regenerates itself, he told us, there were too many tumors throughout the liver to take a portion out. They also do not do liver transplants for people with cancer in the liver. It just doesn’t work.
“How long do I have to live?” I asked. Dr. B
"Most people with stage four liver metastases live for an average of two years," he said. "Some live less, some live longer." Upon hearing this, I started to cry. I’m dying of cancer and I'm embarrassed to cry in front of the doctor. My husband got tears in his eyes as well. He had been with me every step of the way. He loves me so much and is afraid of losing me. I'm afraid of losing me.
Dr. B wanted to start treatment immediately so the rest of the office visit pertained to that. He seemed to be a kind man who would do his best to treat me and keep me alive as long as possible. On the ride home Mike and I were silent. The air felt heavy. But when I noticed rays of sunlight shafting through the spaces in the clouds I felt my heart lift. I envisioned the rays as God's love streaming down to comfort me. I felt my energy level shift to a more positive note as if the sun were pumping me full of warm energy.
When we arrived home my mother-in-law and her friend Chuck were there. We gathered everyone together and gave them the news. Everyone wept. Telling my daughters was painful, mainly because of their reactions. They all hung their heads down low as tears streamed out of their eye and down their cheeks. Each one held their hug a little tighter and longer than usual. Naturally they were upset and scared. I tried to reassure them that I was strong and I would fight this illness with everything I had. I would not go quietly or easy. My strength was comforting to them. I told them how important it would be as a family to live in the moment for no one knows what the future will bring, not even the doctor. Time is wasted wondering about the future when you can be living and enjoying in the present. They agreed with that answer and it seemed to console them just a little.
Some people think children should not be told bad news, but I disagree, kids can handle more than we think. We are open in our house and discuss everything with our kids -- we do however, keep it at their level. Death, unfortunately, is a part of life and my children are well aware of this. They were two, five and seven when my younger brother and brother-in-law died within six months of one another.
They attended the funerals and wakes. My girls were raised with religion so we were all comforted by the fact that their uncles were in heaven with God. We explained that it was their time to go because their work on earth was done.
The rest of the day we talked with my parents, my father-in-law, and other family members. They were sad and frightened, as might be expected, but supportive. The talk was always the same. Tears were shed, encouragement was given, and many prayers were said. None of my own family members live in the same state as we, so they all wanted to come out and help. We’d make arrangements down the road for scattered visits from everyone.
START OF TREATMENT--SUMMER 2003
Treatment started on July 5, 2003. I was nervous. I don’t want to be sick and bald, I thought, but I want to live. Mike accompanied me because it is an all day affair and you are groggy from the drugs when you are done. We left at 8:00 in the morning. The treatment always starts with lab work. Blood is drawn to check all of your white and red blood cell levels. If your counts are too low you can't receive treatment. When we got home it was already 5:00 p.m. One of my wonderful neighbors, made and brought over a beautiful dinner of baked chicken, asparagus, mashed potatoes, gravy and fruit for dessert. It smelled and looked wonderful. Everyone enjoyed the meal. I was the only one who couldn't partake in the feast because I had started the macrobiotic diet. The macrobiotic diet in one that uses organic ingredients grown in your region if possible, and is mostly vegetables, legumes, rice, some fruits no preservatives, and absolutely no sugar, it is supposed to be an easy diet for your body to digest so the rest of the body can concentrate on healing. I had brown rice with lentils and vegetables. It wasn't satisfying, but after the treatment I wasn't very hungry.
The next few days were rough. I felt tired and nauseous. Most of my time was spent in bed sleeping. The symptoms became difficult to deal with right away. Sores appeared in my mouth and my eyes became very watery, it was as if I was constantly crying. My negative side effects progressed until it became difficult to eat and drink.
About a week after my first treatment for the metastasized cancer I developed a fever. I remember sitting with my good friend Cindy, watching the Food Network trying desperately to eat some oatmeal. It took me an hour to eat because of the sores in my mouth. When we finished lunch I got the chills. Cindy left so I could lie down, but I didn’t get any better and, when I took my temperature, found that I had a fever of 101.
If an individual develops a fever while on chemo it requires a trip to the hospital. During chemo, the immune system is suppressed and one can easily develop complications. Mike immediately took me to the emergency room after I called him at work and told him to come home.
The emergency room physicians were unable to get my fever down and couldn’t find the source so they admitted me. After spending several hours in the emergency room I finally had a room. My first roommate was a quite sick, she was in constant need of nurses. She had to have help with everything from eating to going to the bathroom. She also moaned and groaned and complained constantly. It was depressing to be in the same room with her.
The only thing I could eat was pudding. My mouth sores were so painful that it was difficult to eat and swallow. The nurses were overwhelmed by my roommate's needs so it was hard to get their attention. The night seemed to last forever for me, my roommate and the nurses.
As day broke, the powers that be came in and told me they were moving me, I wasn't on the floor I needed to be on. Skipidi do dah, something to be excited about! It's the little things in life that keep you going. My new room and roommate were much better. She was also dealing with a late stage cancer which had spread to many vital organs, her condition was much worse mine. Her longest stay in the hospital was three months, but she had a good attitude. I found myself feeling lucky, and praying for her at every turn. You can always look around and see people less fortunate than you no matter what your plight. Look at those situations and feel gratitude for your own. When we were alone I asked her what her name was and I introduced myself. I suppose I'm nosy so I wanted to know what her illness was and how she was doing. She and I swapped stories and gave each other encouragement.
My fever continued to spike. Each time a fever spikes they have to draw blood but they can’t draw it from the IV because it isn't a pure enough specimen, IV's generally have something in them like saline solution or medications which would make lab results unclear. Unfortunately, my veins were not cooperating so it was difficult for the technicians to draw blood. Every time they failed they had to go to another spot and try again, ouch is all I can say about that. My solution to this problem was to picture Jesus standing over both of us so the procedure would go well and that really helped me. I have so much faith in the power of positive thinking. If you believe things will work out they usually do, and when they don't, it just wasn't meant to be. I feel satisfied believing and living that philosophy.
To make matters worse, my hair started falling out. Disgusting clumps of hair were left all over my pillow. My nurse was kind enough to get a male nurse from another floor that had a razor. He was quite funny and made jokes, he loved how perfect my bald head was, he asked if he could rub the cherub Buddha head for good luck. He made me laugh. I felt much better. It was better to be bald than shedding.
On my fourth day in the hospital, my veins were getting harder and harder to get a needle into, so the doctor suggested putting in a port, a device that is surgically implanted to make gaining access to the vein easier. However, each time they attempted to take me down for the procedure my fever spiked, so getting a port would have to wait. Mike and the girls were regular visitors, and, as one might suspect, the girls were frightened. They wanted me to come home. I assured them that I was only sick from the medicine, not the cancer. I’m not sure they believed me because I looked and felt like shit.
Advice
Find the right Dr. for you, this may take time but it is worth it. You have to feel comfortable with the person treating you and you need to have faith in them.
Be as open and honest with your friends as you can in regard to your health and treatment, it's easier to have it all in the open.
Let your good friends or family emotionally in so they can help you. You will need their support. If they offer to make a meal, let them, it will take a small burden away from you.
Shave your head before it all starts to fall out. When hair falls out in stages you feel much sicker emotionally.
Know that there are others out there that have it worse than you. Be grateful for all the little things.
Use the power of positive thinking. It will turn your life around.
A scheduled visit to a new oncologist, whom I'll call Dr. B, awaited me. Dr. B was the head of clinical trials so I was eager and excited to meet him. I knew when he walked into the room that I liked him. He was a gangly 6'4" man with kind blue eyes and premature grey hair. He reminded me of the smart, tall, lanky kid in high school who was a genius, but wouldn't come into his own until college.
As we discussed my situation and options, we soon found out that I was not eligible for any clinical trials. Many clinical trials are quite specific about who is and who is not eligible. There were only a few trials available and I hadn't failed on enough previous drugs to qualify. I would be put on a regimen of Taxateer and Zaloda. I didn't know much about them other than they were like any other chemo drug, but one of them was oral and one was fed through the veins.
Surgery was out as an option as well. Even though the liver regenerates itself, he told us, there were too many tumors throughout the liver to take a portion out. They also do not do liver transplants for people with cancer in the liver. It just doesn’t work.
“How long do I have to live?” I asked. Dr. B
"Most people with stage four liver metastases live for an average of two years," he said. "Some live less, some live longer." Upon hearing this, I started to cry. I’m dying of cancer and I'm embarrassed to cry in front of the doctor. My husband got tears in his eyes as well. He had been with me every step of the way. He loves me so much and is afraid of losing me. I'm afraid of losing me.
Dr. B wanted to start treatment immediately so the rest of the office visit pertained to that. He seemed to be a kind man who would do his best to treat me and keep me alive as long as possible. On the ride home Mike and I were silent. The air felt heavy. But when I noticed rays of sunlight shafting through the spaces in the clouds I felt my heart lift. I envisioned the rays as God's love streaming down to comfort me. I felt my energy level shift to a more positive note as if the sun were pumping me full of warm energy.
When we arrived home my mother-in-law and her friend Chuck were there. We gathered everyone together and gave them the news. Everyone wept. Telling my daughters was painful, mainly because of their reactions. They all hung their heads down low as tears streamed out of their eye and down their cheeks. Each one held their hug a little tighter and longer than usual. Naturally they were upset and scared. I tried to reassure them that I was strong and I would fight this illness with everything I had. I would not go quietly or easy. My strength was comforting to them. I told them how important it would be as a family to live in the moment for no one knows what the future will bring, not even the doctor. Time is wasted wondering about the future when you can be living and enjoying in the present. They agreed with that answer and it seemed to console them just a little.
Some people think children should not be told bad news, but I disagree, kids can handle more than we think. We are open in our house and discuss everything with our kids -- we do however, keep it at their level. Death, unfortunately, is a part of life and my children are well aware of this. They were two, five and seven when my younger brother and brother-in-law died within six months of one another.
They attended the funerals and wakes. My girls were raised with religion so we were all comforted by the fact that their uncles were in heaven with God. We explained that it was their time to go because their work on earth was done.
The rest of the day we talked with my parents, my father-in-law, and other family members. They were sad and frightened, as might be expected, but supportive. The talk was always the same. Tears were shed, encouragement was given, and many prayers were said. None of my own family members live in the same state as we, so they all wanted to come out and help. We’d make arrangements down the road for scattered visits from everyone.
START OF TREATMENT--SUMMER 2003
Treatment started on July 5, 2003. I was nervous. I don’t want to be sick and bald, I thought, but I want to live. Mike accompanied me because it is an all day affair and you are groggy from the drugs when you are done. We left at 8:00 in the morning. The treatment always starts with lab work. Blood is drawn to check all of your white and red blood cell levels. If your counts are too low you can't receive treatment. When we got home it was already 5:00 p.m. One of my wonderful neighbors, made and brought over a beautiful dinner of baked chicken, asparagus, mashed potatoes, gravy and fruit for dessert. It smelled and looked wonderful. Everyone enjoyed the meal. I was the only one who couldn't partake in the feast because I had started the macrobiotic diet. The macrobiotic diet in one that uses organic ingredients grown in your region if possible, and is mostly vegetables, legumes, rice, some fruits no preservatives, and absolutely no sugar, it is supposed to be an easy diet for your body to digest so the rest of the body can concentrate on healing. I had brown rice with lentils and vegetables. It wasn't satisfying, but after the treatment I wasn't very hungry.
The next few days were rough. I felt tired and nauseous. Most of my time was spent in bed sleeping. The symptoms became difficult to deal with right away. Sores appeared in my mouth and my eyes became very watery, it was as if I was constantly crying. My negative side effects progressed until it became difficult to eat and drink.
About a week after my first treatment for the metastasized cancer I developed a fever. I remember sitting with my good friend Cindy, watching the Food Network trying desperately to eat some oatmeal. It took me an hour to eat because of the sores in my mouth. When we finished lunch I got the chills. Cindy left so I could lie down, but I didn’t get any better and, when I took my temperature, found that I had a fever of 101.
If an individual develops a fever while on chemo it requires a trip to the hospital. During chemo, the immune system is suppressed and one can easily develop complications. Mike immediately took me to the emergency room after I called him at work and told him to come home.
The emergency room physicians were unable to get my fever down and couldn’t find the source so they admitted me. After spending several hours in the emergency room I finally had a room. My first roommate was a quite sick, she was in constant need of nurses. She had to have help with everything from eating to going to the bathroom. She also moaned and groaned and complained constantly. It was depressing to be in the same room with her.
The only thing I could eat was pudding. My mouth sores were so painful that it was difficult to eat and swallow. The nurses were overwhelmed by my roommate's needs so it was hard to get their attention. The night seemed to last forever for me, my roommate and the nurses.
As day broke, the powers that be came in and told me they were moving me, I wasn't on the floor I needed to be on. Skipidi do dah, something to be excited about! It's the little things in life that keep you going. My new room and roommate were much better. She was also dealing with a late stage cancer which had spread to many vital organs, her condition was much worse mine. Her longest stay in the hospital was three months, but she had a good attitude. I found myself feeling lucky, and praying for her at every turn. You can always look around and see people less fortunate than you no matter what your plight. Look at those situations and feel gratitude for your own. When we were alone I asked her what her name was and I introduced myself. I suppose I'm nosy so I wanted to know what her illness was and how she was doing. She and I swapped stories and gave each other encouragement.
My fever continued to spike. Each time a fever spikes they have to draw blood but they can’t draw it from the IV because it isn't a pure enough specimen, IV's generally have something in them like saline solution or medications which would make lab results unclear. Unfortunately, my veins were not cooperating so it was difficult for the technicians to draw blood. Every time they failed they had to go to another spot and try again, ouch is all I can say about that. My solution to this problem was to picture Jesus standing over both of us so the procedure would go well and that really helped me. I have so much faith in the power of positive thinking. If you believe things will work out they usually do, and when they don't, it just wasn't meant to be. I feel satisfied believing and living that philosophy.
To make matters worse, my hair started falling out. Disgusting clumps of hair were left all over my pillow. My nurse was kind enough to get a male nurse from another floor that had a razor. He was quite funny and made jokes, he loved how perfect my bald head was, he asked if he could rub the cherub Buddha head for good luck. He made me laugh. I felt much better. It was better to be bald than shedding.
On my fourth day in the hospital, my veins were getting harder and harder to get a needle into, so the doctor suggested putting in a port, a device that is surgically implanted to make gaining access to the vein easier. However, each time they attempted to take me down for the procedure my fever spiked, so getting a port would have to wait. Mike and the girls were regular visitors, and, as one might suspect, the girls were frightened. They wanted me to come home. I assured them that I was only sick from the medicine, not the cancer. I’m not sure they believed me because I looked and felt like shit.
Advice
Find the right Dr. for you, this may take time but it is worth it. You have to feel comfortable with the person treating you and you need to have faith in them.
Be as open and honest with your friends as you can in regard to your health and treatment, it's easier to have it all in the open.
Let your good friends or family emotionally in so they can help you. You will need their support. If they offer to make a meal, let them, it will take a small burden away from you.
Shave your head before it all starts to fall out. When hair falls out in stages you feel much sicker emotionally.
Know that there are others out there that have it worse than you. Be grateful for all the little things.
Use the power of positive thinking. It will turn your life around.
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