We have all heard of the terms: sleepwalking, living in your own world, being out of it, out there on your own. Well, yesterday, I heard the words "sleep living" in my mind! I felt I was telling myself something and I needed to grab onto these two words and then figure out what they meant to me. So right now, with you and my computer...I will find out.
As I write, I am hoping that the meaning of sleep living will become clear to me. I have had to alter my life since October, 2009 in order to fit in all the medical routines, appointments, and pill taking that are required in order for me to heal. What has worried me is that not one of my wonderful doctors has guaranteed that my mouth will heal and that I will be able to speak better and eat food and drink liquids. What do I do with this ambiguity...I sleep live.
I wake up in the morning, after going to bed very late. Therefore, I guarantee that I am tired and eventually as the week moves on from Monday to Sunday, I am exhausted. In this state of tiredness I live. I take my pills, use the food tube, go to doctors appointments, write, and exist. At this level of functioning I am alert; however, what I have done is I have distanced myself from life by popping in and out of tiredness. Are you following me? I function well. I pay my bills, write to people, handle business matters - all items that are not a threat to me.
Because I haven't wanted to be fully awake to what has been physically happening to me, I have kept myself just awake enough and tired enough to function. Nothing is too bad or too good. Things are just what they are. But let's look at what I have sacrificed!
I do not feel the vitality of life that I so love. My laughter is infrequent and often muffled. I choose to be alone because it takes less effort. And I have to push myself to do things. But since I have uncovered the concept of "sleep living" I can do away with it.
All I need to do is fully look at what is happening to me and just let it be. My therapist frequently tells me I ruminate...of course I debate this with her...you see my form of rumination is sneaky, I think about my illness under the guise of planning what I need to do.
However, to break the hold that sleep living has on me, tonight I am going to bed at 11PM and waking at 8AM. When I wake up I am going to kiss my partner and cats "Good Morning", say a few prayers, listen to Joshua Bell and then jump into the shower and wash away all the pain, doubt and sleepiness.
Tomorrow, I will let you know if I awake from "Sleep Living" and find a more alive me.
God Bless all our efforts...do something kind to someone you do not know. It's fun. Yesterday I gave a bakery worker a tip for being kind to me and attempting to understand me as I ordered. The money was nice but I could see on the young man's face that what touched him most was that I appreciated his actions and sweetness..........................amf
Thursday, January 28, 2010
Monday, January 25, 2010
Lost and Found
I have been so lost for three months... I have been caught up in a world filled with doctors and more doctors, hospitals and needles, injections and medicine, diagnosis and prognosis. All creating a world of emotional turmoil and tears. I have been lost but now I am found.
Starting in October, 2009 , I have been in a position of learning about the health care system from the inside. I have been hospitalized twice; I am participating in a Protocol Stage I treatment for cancer; I have almost weekly appointments with doctors. I am now on a food tube and cannot eat or drink through my mouth because I have a determined infection; and on October 31, 2009, yes, on Halloween, I fractured my hip as I was walking...just walking. I have been on crutches since then...and will move on to a cane in March.
Throughout all of this I have seen the best in so many people. I have had the best nurses at MSKCC in NY. I have doctors now who care for me - me the person, me the human being. I fired a doctor. Does that amaze you? Well, everyone told me that I cannot fire a doctor since I am not his boss. But my logic was I fired him by throwing him off my health team and getting another doctor to take me on as his patient. If I am to survive I need the best and the kindest medical people taking care of me and now I can proudly say that my new medical team is made up of those people. Remember always that we are entitled to be treated skillfully and kindly!
I have found my friends interesting during this period...they came in close when they could and retreated when their own lives and fears demanded that they do this. My therapist, what a wonderful person and I love her dearly, kept me sane and moving forward, step by step. When I tripped and fell she reached out to me and helped me up with her words so that I could continue my journey.
She told me that sometimes people have to back away when people are sick. I had a hard time accepting that and I kept saying over and over again, "I just don't get it. I just don't get it." It was like a litany for me. I cried...I screamed...I begged... My therapist wrote to me on the computer and called me since I was not able to make my sessions. After asking her why my friends had all seemed to disappear I finally got bored with the question and since I trust her, I decided to accept what she had said and I moved off that question and moved on! It had been holding me back. She encouraged me to do things and to try to find ways to be happy and as hard as it was I did find those things ...slowly at first, but eventually they started to fall into my life.
My partner almost melted from the heat at home. My partner tried her best but had so much pressure placed on her by the situation and by me. I couldn't cope alone and I felt I was sinking fast...Too many things happening so quickly. I had a major infection in my mouth that required me to be hospitalized for 12 days; I needed to use a food tube and not eat; I had to infuse myself through a mediport with antibiotics; I fractured my hip; I couldn't drive; I went back into the hospital with a serious blood infection and almost died. There is so much more but to save your sanity and mine I will end the list here.
I had to update you on where I have been and why I hadn't been writing...but I also want you to know that during the last three months I had great moments.
I had joined Soldier's Angels in 2008 and I wrote to three soldiers stationed in Iraq and Afghanistan and sent packages. Giving to them kept me sane and helped to give my life a purpose. I also got involved with sending post cards and holiday cards to our soldiers. I sent packages to the wounded and I wrote to the President Obama about getting our men and women home. Involving myself in other causes gave my life a purpose and got me to stop, even if it were for a while, thinking about me and my health problems.
I am glad to be back and I have so much to tell you about and so many things to share with you.
Mariposa, mariposa you live your life with such abandon, knowing no fear
Mariposa, mariposa small at birth but large,colorful wings do appear
You enter our lives, as we watch you fly
You move from flower to flower, our eyes follow as you go by
Mariposa, mariposa make room for me
Teach me the gifts of nature that are yours by birth
Show me how to accept without fear what my life cycle is!
Mariposa, mariposa land on my hand, gentle one, I hold you safely.
I write about butterflies because I feel some kind of connection with them. Once when I was volunteering at MSKCC I was asked to speak to a man of 41 years of age who had terminal cancer. He could not speak but he could write and then I answered him. After asking me a few questions, he wrote: "I am afraid to die." Please accept this as truth... I paused before I responded and during that pause I saw butterflies flying around both of us. So my answer to him was that all things have a natural life cycle and just like butterflies we are born, we live and then our life cycle ends. He felt comforted by that and he put his head in my arms and sobbed and wrote: " I know what you mean." There is no answer to why some of us live longer than others. There are no words that can explain why someone is going to die. Some of us have faith and hope. Others believe what they do... I just believe in the butterfly and that I will die when I have learned all that I was sent to learn and I hopefully will be content.
God bless you all! AMF
Starting in October, 2009 , I have been in a position of learning about the health care system from the inside. I have been hospitalized twice; I am participating in a Protocol Stage I treatment for cancer; I have almost weekly appointments with doctors. I am now on a food tube and cannot eat or drink through my mouth because I have a determined infection; and on October 31, 2009, yes, on Halloween, I fractured my hip as I was walking...just walking. I have been on crutches since then...and will move on to a cane in March.
Throughout all of this I have seen the best in so many people. I have had the best nurses at MSKCC in NY. I have doctors now who care for me - me the person, me the human being. I fired a doctor. Does that amaze you? Well, everyone told me that I cannot fire a doctor since I am not his boss. But my logic was I fired him by throwing him off my health team and getting another doctor to take me on as his patient. If I am to survive I need the best and the kindest medical people taking care of me and now I can proudly say that my new medical team is made up of those people. Remember always that we are entitled to be treated skillfully and kindly!
I have found my friends interesting during this period...they came in close when they could and retreated when their own lives and fears demanded that they do this. My therapist, what a wonderful person and I love her dearly, kept me sane and moving forward, step by step. When I tripped and fell she reached out to me and helped me up with her words so that I could continue my journey.
She told me that sometimes people have to back away when people are sick. I had a hard time accepting that and I kept saying over and over again, "I just don't get it. I just don't get it." It was like a litany for me. I cried...I screamed...I begged... My therapist wrote to me on the computer and called me since I was not able to make my sessions. After asking her why my friends had all seemed to disappear I finally got bored with the question and since I trust her, I decided to accept what she had said and I moved off that question and moved on! It had been holding me back. She encouraged me to do things and to try to find ways to be happy and as hard as it was I did find those things ...slowly at first, but eventually they started to fall into my life.
My partner almost melted from the heat at home. My partner tried her best but had so much pressure placed on her by the situation and by me. I couldn't cope alone and I felt I was sinking fast...Too many things happening so quickly. I had a major infection in my mouth that required me to be hospitalized for 12 days; I needed to use a food tube and not eat; I had to infuse myself through a mediport with antibiotics; I fractured my hip; I couldn't drive; I went back into the hospital with a serious blood infection and almost died. There is so much more but to save your sanity and mine I will end the list here.
I had to update you on where I have been and why I hadn't been writing...but I also want you to know that during the last three months I had great moments.
I had joined Soldier's Angels in 2008 and I wrote to three soldiers stationed in Iraq and Afghanistan and sent packages. Giving to them kept me sane and helped to give my life a purpose. I also got involved with sending post cards and holiday cards to our soldiers. I sent packages to the wounded and I wrote to the President Obama about getting our men and women home. Involving myself in other causes gave my life a purpose and got me to stop, even if it were for a while, thinking about me and my health problems.
I am glad to be back and I have so much to tell you about and so many things to share with you.
Mariposa, mariposa you live your life with such abandon, knowing no fear
Mariposa, mariposa small at birth but large,colorful wings do appear
You enter our lives, as we watch you fly
You move from flower to flower, our eyes follow as you go by
Mariposa, mariposa make room for me
Teach me the gifts of nature that are yours by birth
Show me how to accept without fear what my life cycle is!
Mariposa, mariposa land on my hand, gentle one, I hold you safely.
I write about butterflies because I feel some kind of connection with them. Once when I was volunteering at MSKCC I was asked to speak to a man of 41 years of age who had terminal cancer. He could not speak but he could write and then I answered him. After asking me a few questions, he wrote: "I am afraid to die." Please accept this as truth... I paused before I responded and during that pause I saw butterflies flying around both of us. So my answer to him was that all things have a natural life cycle and just like butterflies we are born, we live and then our life cycle ends. He felt comforted by that and he put his head in my arms and sobbed and wrote: " I know what you mean." There is no answer to why some of us live longer than others. There are no words that can explain why someone is going to die. Some of us have faith and hope. Others believe what they do... I just believe in the butterfly and that I will die when I have learned all that I was sent to learn and I hopefully will be content.
God bless you all! AMF
Friday, September 11, 2009
Tears from th sky....9/11/2001
Where have I been since April 2009? Working on health problems and hearing new diagnosis. I have spent time whirling around as I attempted to absorb the information I heard. I have met new doctors in the attempt to stop the spread of the cancer that seems to have an affinity for my body.
But today I am again sitting here watching the television as the 9/11 Memorial Service in NYC plays out. The names are being read and I hear them and occasionally I look up and see faces and ages and I realize that since 2001 I have lived and continue to live...while over three thousand strangers who are now friends in my heart and prayers are gone. How lucky I am to be alive!
To you my brave and courageous friends
Who lost your lives that one, bleak day
When America lost its innocence
And you lost your lives.
Some of you rushed in to help others
Wanting them to live and to survive
Some of you called home to say, "Goodbye and I love you."
And most of you lost your lives and we miss you all!
Today it is raining...tears from the sky
Tears that we all shed each year
As 9/11 comes around
Tears from the sky
There is no way to say goodbye.
We have tried to rebuild what once was
Buildings, lives, families
Small children have now grown
Husbands and wives hold you in their hearts
Families and friends tell stories about you.
So many lives lost
So many tears still fall from the eyes
Of family, friends and strangers alike
So many years have passed
And you are all remembered
God bless you all
God bless America
You are all at peace now
But I wish you had lived
Tears from the sky
Tears from our eyes
I took a pause to write the words above because I have no right to complain really...I am alive! Peace to all..........God bless our country, our military, President Obama.
I encourage all of you who read this to volunteer...Soldiers Angels. It is a group of volunteers who adopt military personnel who are stationed far from home in the war zones. I have adopted four soldiers and I write to them frequently and send packages once a month. Each one has said in his/her own way that it is a surprise that we at home care about them enough to write. This soldiers are serving in Iraq and Afghanistan. They are often so young and could use our help and support and I must admit I get soooooooooooooo much from my contact that I believe I am the one who receives the gift! AMF
But today I am again sitting here watching the television as the 9/11 Memorial Service in NYC plays out. The names are being read and I hear them and occasionally I look up and see faces and ages and I realize that since 2001 I have lived and continue to live...while over three thousand strangers who are now friends in my heart and prayers are gone. How lucky I am to be alive!
To you my brave and courageous friends
Who lost your lives that one, bleak day
When America lost its innocence
And you lost your lives.
Some of you rushed in to help others
Wanting them to live and to survive
Some of you called home to say, "Goodbye and I love you."
And most of you lost your lives and we miss you all!
Today it is raining...tears from the sky
Tears that we all shed each year
As 9/11 comes around
Tears from the sky
There is no way to say goodbye.
We have tried to rebuild what once was
Buildings, lives, families
Small children have now grown
Husbands and wives hold you in their hearts
Families and friends tell stories about you.
So many lives lost
So many tears still fall from the eyes
Of family, friends and strangers alike
So many years have passed
And you are all remembered
God bless you all
God bless America
You are all at peace now
But I wish you had lived
Tears from the sky
Tears from our eyes
I took a pause to write the words above because I have no right to complain really...I am alive! Peace to all..........God bless our country, our military, President Obama.
I encourage all of you who read this to volunteer...Soldiers Angels. It is a group of volunteers who adopt military personnel who are stationed far from home in the war zones. I have adopted four soldiers and I write to them frequently and send packages once a month. Each one has said in his/her own way that it is a surprise that we at home care about them enough to write. This soldiers are serving in Iraq and Afghanistan. They are often so young and could use our help and support and I must admit I get soooooooooooooo much from my contact that I believe I am the one who receives the gift! AMF
Monday, April 27, 2009
Drafting and Drifting..
I started this article sometime after the election; so where have I been all those months? Drafting articles, going to doctors, and hearing news about my status as a Survivor of Cancer. Well, since December, 2008 I have heard that I have cancer in my lungs, in my mouth and now in my kidneys. From each of these bangs...I went further into myself and you know what I found- a very small, lonely child. And now the article is edited and here it is, a few months late...what is late anyway? I hope you enjoy my thoughts and can feel my spirit!
The election is over! I am so thrilled that our President-Elect is Barack Obama. If this happiness and joy were the medicines that could cure, then I would be cancer free. Maybe if I start to accept that everything that feels good emotionally will help me to feel good physically, magic will happen. Wow, what a clear way to figure things out. Nothing complicated. If it doesn't feel good: it will add to the confusion of the cells in my body...so walk away.
So...why don't I walk away? I always have a good reason and it never is really my own reason. It is what I was taught and what I have come to expect from others. It is all the little things I decide or believe I should do to make someone happy or make the world a better place to live in. No, seriously, I donated more money to Obama's campaign than six of my friends did. And I have less money. So why add more pressure to my life? Why, did I do that? I donated money because that is what a good citizen does.
It was only when Obama's commercials and political ads came on the Internet; when I saw and heard him speak, debate or just be interviewed, I just couldn't help myself...no I didn't want to stop believing that something good, something great could happen in my lifetime and I could be a part of it. This was a period of time that hard issues were happening in my life medically and emotionally, and I was hardly rocked . I could utilize my many moments of happiness and joy about a man I did not know but trusted a great deal I was so happy and excited about President -elect Obama... that I felt so healthy and so hopeful that my body was calling out "Healing Words". I felt that the joy I felt had a healing effect.
As I spent time involved in the election and in the results, I realized that I had not thought about having Cancer once. Occupying myself with things that are life enhancing, actually gives me a lift. I am trying to accept that I was put on this earth for a reason and the reason is to be joyful and happy. I have gathered a few new people around me who support this way of thinking and I can tell you that it is easier when you know you are not alone.
I have two doctors who support the medical practices of both the East and the West. And since this has always been part of my belief system I have gained a great deal of knowledge about myself. I found out in one session that I have learned to function at a high level of stress all the time...so I never really feel stressed, even when I am. When I finally feel the stress I am really in a desperate emotional state. Imagine what this, year after year, has done to my spirits, emotions and body. So I am learning ways to reduce my stress before I am over-stressed which could impact my immune system, which could...., which could.... Got to go! god bless you all. Me
I found myself crying and the words, "Raining Tears" came into my mind. I am sure that they are probably words from a song or poem...but right now they are mine to use.
RAINING TEARS
Raining Tears as I search to find my way, confused and confounded,
Through the pathways I must wander.
I try to make sense of this journey I am on
As I use life's lessons which I know will heal my soul.
And then I see the yellow daffodils that I planted.
The election is over! I am so thrilled that our President-Elect is Barack Obama. If this happiness and joy were the medicines that could cure, then I would be cancer free. Maybe if I start to accept that everything that feels good emotionally will help me to feel good physically, magic will happen. Wow, what a clear way to figure things out. Nothing complicated. If it doesn't feel good: it will add to the confusion of the cells in my body...so walk away.
So...why don't I walk away? I always have a good reason and it never is really my own reason. It is what I was taught and what I have come to expect from others. It is all the little things I decide or believe I should do to make someone happy or make the world a better place to live in. No, seriously, I donated more money to Obama's campaign than six of my friends did. And I have less money. So why add more pressure to my life? Why, did I do that? I donated money because that is what a good citizen does.
It was only when Obama's commercials and political ads came on the Internet; when I saw and heard him speak, debate or just be interviewed, I just couldn't help myself...no I didn't want to stop believing that something good, something great could happen in my lifetime and I could be a part of it. This was a period of time that hard issues were happening in my life medically and emotionally, and I was hardly rocked . I could utilize my many moments of happiness and joy about a man I did not know but trusted a great deal I was so happy and excited about President -elect Obama... that I felt so healthy and so hopeful that my body was calling out "Healing Words". I felt that the joy I felt had a healing effect.
As I spent time involved in the election and in the results, I realized that I had not thought about having Cancer once. Occupying myself with things that are life enhancing, actually gives me a lift. I am trying to accept that I was put on this earth for a reason and the reason is to be joyful and happy. I have gathered a few new people around me who support this way of thinking and I can tell you that it is easier when you know you are not alone.
I have two doctors who support the medical practices of both the East and the West. And since this has always been part of my belief system I have gained a great deal of knowledge about myself. I found out in one session that I have learned to function at a high level of stress all the time...so I never really feel stressed, even when I am. When I finally feel the stress I am really in a desperate emotional state. Imagine what this, year after year, has done to my spirits, emotions and body. So I am learning ways to reduce my stress before I am over-stressed which could impact my immune system, which could...., which could.... Got to go! god bless you all. Me
I found myself crying and the words, "Raining Tears" came into my mind. I am sure that they are probably words from a song or poem...but right now they are mine to use.
RAINING TEARS
Raining Tears as I search to find my way, confused and confounded,
Through the pathways I must wander.
I try to make sense of this journey I am on
As I use life's lessons which I know will heal my soul.
And then I see the yellow daffodils that I planted.
Friday, January 9, 2009
Chiquitita
I am not fluent in Spanish but I just understood a part of myself from the word, Chiquitita. I feel so much like a small baby chicken...slowing and blindly moving around...looking for a way to survive. I recently got two more unpopular reports about my chronic health problem -Cancer. More unpopular - because the reports were not good but they were not horrible. I just don't want to accept them. Cheep, cheep, cheep
Feeling like a little chick gives me the opportunity to shut off most of my human emotions and just keep my head to the ground looking for survival seeds. Chickens don't share, don't care, don't laugh and don't cry. The "don't list" is endless. And I can escape from my reality for a while. Sometimes when I get overloaded and overburdened I look for a way to empty my mind...being a chick might be it!
Chiquitita .....the title of a song from "Mam ma Mia". I truly suggest that you buy the DVD movie that offers the option of singing along with the movie or singing after the movie is over. I can tell you it broke through my down trodden manner and cheered me up. Music can do that! Basically what appeals to me is that inside each of us is that small child who still has needs. "Chiquitita, tell me what's wrong." I have always wanted someone to ask me that and now with all the constant medical diagnosis..........I do need to tell someone what is wrong. God bless our new President and his family. amf
Feeling like a little chick gives me the opportunity to shut off most of my human emotions and just keep my head to the ground looking for survival seeds. Chickens don't share, don't care, don't laugh and don't cry. The "don't list" is endless. And I can escape from my reality for a while. Sometimes when I get overloaded and overburdened I look for a way to empty my mind...being a chick might be it!
Chiquitita .....the title of a song from "Mam ma Mia". I truly suggest that you buy the DVD movie that offers the option of singing along with the movie or singing after the movie is over. I can tell you it broke through my down trodden manner and cheered me up. Music can do that! Basically what appeals to me is that inside each of us is that small child who still has needs. "Chiquitita, tell me what's wrong." I have always wanted someone to ask me that and now with all the constant medical diagnosis..........I do need to tell someone what is wrong. God bless our new President and his family. amf
Thursday, October 23, 2008
So much more to life...during Chemotherapy!
Chemotherapy can leave us with many different feelings -- what to do ? what to do? Depending on how each of us feels it is important that on the "Good" days, we grab the time to do things that make us feel good. I love massages and acupuncture. I set up appointments for massages, facials, and acupuncture sessions. I even had a manicure and a pedicure. I frequently went to Bloomingdales and went to the MAC counter and had the technician help me with makeup ---I lined my eyes, used color to pop my eyes, got make-up, blush and lipstick and the result was startling.
Although I tended to wear black and grey, I used my head scarves to bring color to my wardrobe. Remember, this is what I did when I felt "Good". Those days usually came at the end of the treatment period....right before I was scheduled to get my next chemo treatment. So, just as I was feeling and looking good...that time was here. But I was ready for the good days that would happen in about five days..
I found that the chemo cycles went like this: chemo......sick.......start to feel better.....feel good....next treatment and then the chemo cycle started again. With each chemo session the time of illness grew and the time of feeling good got reduced. But I want to remind all of us...there are options to feeling miserable and your arsenal of positive actions should be ready. Write a list of what you will do because believe me...you won't remember what to do as you are leaning into the toilet bowl. By the way, use a basin when you are nauseous and not the toilet bowl. Why you may ask...The reason is we deserve better.
Keep a record of the things you can do when you feel good. Have everything ready. Have a plans for when you are feeling sick..........remember eat white food! and stock up on ginger ale or cola. Find what makes you feel better and have it all ready. Arrange where you will sleep or sit...plan how each day will go and then using all your God given strength....move on. The day you finish your treatment............sleep and rent movies for the times you are awake. And don't move your head too much. You and I both know that what I have written does not apply to everyone...but what I am trying to tell you is BE PREPARED!
"You are a child of god and a special person."Course in Miracles." amf
I have always fought being called a CANCER SURVIVOR. So many of my friends
Although I tended to wear black and grey, I used my head scarves to bring color to my wardrobe. Remember, this is what I did when I felt "Good". Those days usually came at the end of the treatment period....right before I was scheduled to get my next chemo treatment. So, just as I was feeling and looking good...that time was here. But I was ready for the good days that would happen in about five days..
I found that the chemo cycles went like this: chemo......sick.......start to feel better.....feel good....next treatment and then the chemo cycle started again. With each chemo session the time of illness grew and the time of feeling good got reduced. But I want to remind all of us...there are options to feeling miserable and your arsenal of positive actions should be ready. Write a list of what you will do because believe me...you won't remember what to do as you are leaning into the toilet bowl. By the way, use a basin when you are nauseous and not the toilet bowl. Why you may ask...The reason is we deserve better.
Keep a record of the things you can do when you feel good. Have everything ready. Have a plans for when you are feeling sick..........remember eat white food! and stock up on ginger ale or cola. Find what makes you feel better and have it all ready. Arrange where you will sleep or sit...plan how each day will go and then using all your God given strength....move on. The day you finish your treatment............sleep and rent movies for the times you are awake. And don't move your head too much. You and I both know that what I have written does not apply to everyone...but what I am trying to tell you is BE PREPARED!
"You are a child of god and a special person."Course in Miracles." amf
I have always fought being called a CANCER SURVIVOR. So many of my friends
Wednesday, October 1, 2008
Chemotherapy - so much to learn!
Don't start chemo therapy until you know what is going to happen to you, both physically and emotionally. Even if you have already started chemo...something I write might help you.
I had six months of chemo in 2004 for breast cancer and I now realize how I should have prepared myself. I found out what was going to happen as it happened and I had to keep adjusting myself. I hope my suggestions will help all of us remember that as the patient we need to feel empowered and we must insure that we always know what is happening and that we always have the right of "first refusal". We can say, "No, thank you." as well as "Yes, I like the plan we worked out for me."
We are not responsible for the fears of our family and friends. This might sound unfeeling but I am only encouraging us to remember that the needs and wants of the patient have to come first. All to often some cancer patients do things or have treatments before they are ready and comfortable with what is happening. Sometimes it is at the urging of family and/or friends and sometimes it is the doctor. No one will ever convince me that a week or month's delay in surgery or treatment will really alter how long I will live or how effective the surgery and/or the treatment will be. Well, maybe never...
Therefore,
First, purchase a notebook that you feel comfortable with and two or three pens.This notebook will be your constant companion whenever you have any appointments with any one who is involved with your health care. You should write down the purpose of the visit, any comments or decisions and the names of ALL drugs that enter your body. Know the names of the chemicals that you are choosing, what they are suppose to do and any and all side effects. For every side effect there is a PILL. I say this from experience... the experience I had each and every time I said: I am nauseous. There must be something you can do." Never ask the doctors, " Can You Help Me?" , assume that they can and you know despite their best efforts not to help....they do. Only kidding some of my BEST DOCTORS are doctors.Before I make any decisions about my care I need to understand what will happen. Therefore, I will write some notes and ask some questions
Don't be surprised if you are asked: "What do you want to do?" When the oncologist told me what chemicals would be in my "cocktail" and that I could have a choice of chemicals. I looked at her as if she were crazy!!!!! I had been an elementary school principal, so if she had asked me what procedures I wanted to follow during a fire drill, I was prepared. But how should I know what chemo therapy I should use. My brain had already stopped functioning back when I was told that I had breast cancer. and I could barely hang on...now I was expected to be an oncologist who planned my therapy treatment plan.
Well, if the medical profession wanted me to play doctor then I would. So I had two conferences with my oncologist, wrote down the planned chemo and the alternatives that were not being used. Determined why certain choices had been made. QUESTION....QUESTION....QUESTION.....AND YOUR LAST AND MOST POIGNANT QUESTION SHOULD BE: "TAKING INTO ACCOUNT MY PROFILE AND PATHOLOGY REPORTS, IF I WERE YOUR SISTER WHAT WOULD YOU TELL ME WAS THE BEST PATH TO FOLLOW AND WHY." Resist the temptation to speak....the silence will get very loud but eventually the doctor will speak. Listen closely to what is said and keep using the "sister" word. It seems to create a more personal relationship instantly.
Eventually, you will have made the decision to have chemo or not to have it. If you choice not to....God Bless You and Let's Keep in Touch and I wish you great joy and peace. Don't look back and never second guess yourself. If you decided to have chemo recognize that the decision you made was very hard and admire yourself for taking the action you took. Chemo is a strange things. No one who has had it, in my world, has every had the same emotional or physical feelings.Try listing your symptoms in the order of prominence and then select the path of action............You can call and see the oncologist and ask for remedies. Remember for every physical symptom like nausea this is a pill. If the first pill doesn't work,,,,keep giving feedback to the doctor. Be aware of the changes, if any, the pill has caused and tell the doctor. Leave with a new prescription, held proudly in your hand.
You slowly work your way down the list and by the time you are at the bottom of your first list, there might be a second....but it does help time to pass as you move through chemo...doing your best to manage your treatment and live your life. Remember this is why we do take chemo.
One of the most frequent complaint about chemo - after losing hair, is how we feel physically. In talking with soooooooo many women who had chemo here are some of what I see as some great remedies for nausea, roller coaster feeling, feet touching the ceiling, chairs spinning and lifting off the floor, and food, oh, food, actually looking like the vomit that eating will cause...
Saltine crackers, tea with honey, ginger ale, oatmeal, farina, and all white foods like white rice, white potatoes, white cheeses, cottage cheese, white bread. I wondered why about this "White Model" and I think that because the color white is so blah we don't think "food" ane we eat.
There will be more to come...but I am off to a Spa with my sister just to be with nature.I hope what I write helps someone...it helps me. You see I am blessed with a person in my life who encouraged me to write. I may never be famous, but I am a person capable of writing what I feel and sharing it, hopefully, in a way that helps those of you who read my blog. By the way...thank you for reading my thoughts.
Will write when I get Back. God bless the election of 2008. AMF
I had six months of chemo in 2004 for breast cancer and I now realize how I should have prepared myself. I found out what was going to happen as it happened and I had to keep adjusting myself. I hope my suggestions will help all of us remember that as the patient we need to feel empowered and we must insure that we always know what is happening and that we always have the right of "first refusal". We can say, "No, thank you." as well as "Yes, I like the plan we worked out for me."
We are not responsible for the fears of our family and friends. This might sound unfeeling but I am only encouraging us to remember that the needs and wants of the patient have to come first. All to often some cancer patients do things or have treatments before they are ready and comfortable with what is happening. Sometimes it is at the urging of family and/or friends and sometimes it is the doctor. No one will ever convince me that a week or month's delay in surgery or treatment will really alter how long I will live or how effective the surgery and/or the treatment will be. Well, maybe never...
Therefore,
from my heart to yours--- I encourage you to stop and breathe! Cancer is what it is and you and I will just have to make decisions that seem to be beyond our abilities. But if we have a system for surviving all that faces us we will feel more powerful and believe me there is real joy in getting the medical profession to stop and listen. I have made it happen on many occasions and I take great pride in these victories.
First, purchase a notebook that you feel comfortable with and two or three pens.This notebook will be your constant companion whenever you have any appointments with any one who is involved with your health care. You should write down the purpose of the visit, any comments or decisions and the names of ALL drugs that enter your body. Know the names of the chemicals that you are choosing, what they are suppose to do and any and all side effects. For every side effect there is a PILL. I say this from experience... the experience I had each and every time I said: I am nauseous. There must be something you can do." Never ask the doctors, " Can You Help Me?" , assume that they can and you know despite their best efforts not to help....they do. Only kidding some of my BEST DOCTORS are doctors.Before I make any decisions about my care I need to understand what will happen. Therefore, I will write some notes and ask some questions
Don't be surprised if you are asked: "What do you want to do?" When the oncologist told me what chemicals would be in my "cocktail" and that I could have a choice of chemicals. I looked at her as if she were crazy!!!!! I had been an elementary school principal, so if she had asked me what procedures I wanted to follow during a fire drill, I was prepared. But how should I know what chemo therapy I should use. My brain had already stopped functioning back when I was told that I had breast cancer. and I could barely hang on...now I was expected to be an oncologist who planned my therapy treatment plan.
Well, if the medical profession wanted me to play doctor then I would. So I had two conferences with my oncologist, wrote down the planned chemo and the alternatives that were not being used. Determined why certain choices had been made. QUESTION....QUESTION....QUESTION.....AND YOUR LAST AND MOST POIGNANT QUESTION SHOULD BE: "TAKING INTO ACCOUNT MY PROFILE AND PATHOLOGY REPORTS, IF I WERE YOUR SISTER WHAT WOULD YOU TELL ME WAS THE BEST PATH TO FOLLOW AND WHY." Resist the temptation to speak....the silence will get very loud but eventually the doctor will speak. Listen closely to what is said and keep using the "sister" word. It seems to create a more personal relationship instantly.
Eventually, you will have made the decision to have chemo or not to have it. If you choice not to....God Bless You and Let's Keep in Touch and I wish you great joy and peace. Don't look back and never second guess yourself. If you decided to have chemo recognize that the decision you made was very hard and admire yourself for taking the action you took. Chemo is a strange things. No one who has had it, in my world, has every had the same emotional or physical feelings.Try listing your symptoms in the order of prominence and then select the path of action............You can call and see the oncologist and ask for remedies. Remember for every physical symptom like nausea this is a pill. If the first pill doesn't work,,,,keep giving feedback to the doctor. Be aware of the changes, if any, the pill has caused and tell the doctor. Leave with a new prescription, held proudly in your hand.
You slowly work your way down the list and by the time you are at the bottom of your first list, there might be a second....but it does help time to pass as you move through chemo...doing your best to manage your treatment and live your life. Remember this is why we do take chemo.
One of the most frequent complaint about chemo - after losing hair, is how we feel physically. In talking with soooooooo many women who had chemo here are some of what I see as some great remedies for nausea, roller coaster feeling, feet touching the ceiling, chairs spinning and lifting off the floor, and food, oh, food, actually looking like the vomit that eating will cause...
Saltine crackers, tea with honey, ginger ale, oatmeal, farina, and all white foods like white rice, white potatoes, white cheeses, cottage cheese, white bread. I wondered why about this "White Model" and I think that because the color white is so blah we don't think "food" ane we eat.
There will be more to come...but I am off to a Spa with my sister just to be with nature.I hope what I write helps someone...it helps me. You see I am blessed with a person in my life who encouraged me to write. I may never be famous, but I am a person capable of writing what I feel and sharing it, hopefully, in a way that helps those of you who read my blog. By the way...thank you for reading my thoughts.
Will write when I get Back. God bless the election of 2008. AMF
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