I belong to a on line Stage 4 breast Cancer list. There are about 800 people from about 20 different countries that read, post, or just lurk. Is has been a blessing to have this group. It is a place where you really feel you belong, others can understand your feeling, they are right there with you. These folks have been there in the middle of the night when I was paralysised with fear or sobbing because the sadness sometimes goes so deep. Whatever the time of day or the problem - the list is always there.
The list goes through it's stages - we will have weeks when so many new people introduce themselves that breast cancer really does seem like something you get from drinking the water. Then there are the weeks when people die one right after the other - some are fairly new to the list, but lately several deaths have been women that took me under their wings when I was new.
And I go through spells when I don't post much, sometimes I feel overwhelmed and just have to take a break, sometimes I feel to lazy to go through the motions, but lately the question of the newcomers have really troubled me. I have finally taken the time to look at why this may be.
The most FAQ from the new people have been " How long do you live with bone mets only?"That was my first question , my next one was " How long until it spreads?" The answer is easy - there isn't one - no one knows. But there is a lot of comfort from meeting others that have been around for up to 9 years ( they died over the summer), it gives you great hope for the future when you are only 1 to 2 years into mets. But these questions, I have figured out, have brought out my anger.
It was only 3 years ago that I was asking all the same questions, looking for reassurance that I would live another year or survive the newest treatment. Now, 3 years later, I still basically only have bone mets with involvement of the pleura - no spread to any major organs. This means that I should be doing well, no where near the end of chemo choices. Yet here I am,
facing a very uncertain future. I've known from the beginning that it is possible to die with just bone mets but I never expected it to happen to me - some how it doesn't seem fair even though the outcome is the same and the usual time line for living with breast cancer is pretty much the same.
Rationally, I know that I am not going to die tonight or tomorrow ( well, as much as any one does). My difficulty with this is the loss of control - yes I know that my sense of control is all a fantasy that I created for my own comfort................ but damm it - I love fantasies
Sunday, September 28, 2008
Friday, September 26, 2008
The signs may be beginning to emerge
I don't know if I ever stated it here, in my blog, but in my journal about this time last year I wrote that I did not think I would make it through the winter of 09. That feeling, vision, knowing, or what ever you want to call it didn't make since - for two reasons: First, I was really doing pretty well, my markers were hanging around normal, still didn't have any mets to major organs, and as far as anyone could tell, the chemos seemed to be working - very hard on my immune system, but working. Now this will sound very trival, but to me it is a more important reason to not understand my feeling of death. 2 maybe 3 years ago I had an awareness, what I call a knowing, anyway I came to know that I would die during a huge snowfall. I love the snow!
Now, we haven't had a snow storm in at least 15 years, we had not had more that 2 or 3 inches of snow in the past 10 year, and the kids have not missed a day of school because of snow in 5 years. One thing you have to understand about Winston Salem NC, is that in years past we would get 5 to 6 inches 2 to 3 times a year and every few years we would get big beautiful snowfalls sometimes reaching 12 to 20 inches - the last time that happened my 30 y.o. son was a toddler.
The past 5 or 6 years have been the warmest on record here - temps staying in the low 100's for as long 7 to 10 days without a break, and a break was temps dropping into the high 90's. These temps started as early as May the past few years and went all the way through Sept, except this summer. May stated off really hot, but I don't think we had any days in the 100's, somedays in the high 90's, but most of the summer was right where it was suppose to be. We got plenty of rain - a first for the past 5 years and on Sept 22, the first day of fall, the temps were in the mid 70's where they have remained. I have given you this lesson in our weather as evidence of thing that may yet come.
When I came to know that I would die during a big snowfall, I figured that I had several years left as there were no signs of our weather changing anytime soon. But now the signs seem to be falling into place. My breathing has continued to worsen, fluid continues to build around my lung - even when they drained 1500 cc off one day, 3 days later it was back. That was Aug 4th - I was admitted to the hospital for what was suppose to be a simple procedure to stop the build up of fluid and would only be there a few days. That few days turned into month - shy 4 days. While there, they found a new tumors on my spine, a rib and 2 lymph nodes near areas where they good cause problem. It was also concluded that my pleural membrane was one big tumor - oh yes - my chemo had obviously quit working.
Now I have started a new chemo, the last one before we have to go back to the seriously toxic drugs, and there seems to be signs that this new chemo is not working. I know from my experience as an oncology nurse that thing can look fine one week and fall all to hell the next. Again I tell you that the signs seem to be falling into place. And as for the weather - this is first time in years that there is even a reasonable possibility that we could have a really good snowfall. I hope I am wrong - I would really like to stay around for a few more years, but if I could choose my time to go, it indeed would be during a big beautiful, silent snowfall - I can't think of anything more peaceful.
Even if I am wrong about it being this year, I do realize that my time is running out. When this chemo fails, be next it month or next year, I do not want to go through what I went through when I was first dx. At least then I knew I only had to endure 4 treatment - I could count down the months of misery. This time it will be until it works no more or the chemo it's self kills me.
Now, we haven't had a snow storm in at least 15 years, we had not had more that 2 or 3 inches of snow in the past 10 year, and the kids have not missed a day of school because of snow in 5 years. One thing you have to understand about Winston Salem NC, is that in years past we would get 5 to 6 inches 2 to 3 times a year and every few years we would get big beautiful snowfalls sometimes reaching 12 to 20 inches - the last time that happened my 30 y.o. son was a toddler.
The past 5 or 6 years have been the warmest on record here - temps staying in the low 100's for as long 7 to 10 days without a break, and a break was temps dropping into the high 90's. These temps started as early as May the past few years and went all the way through Sept, except this summer. May stated off really hot, but I don't think we had any days in the 100's, somedays in the high 90's, but most of the summer was right where it was suppose to be. We got plenty of rain - a first for the past 5 years and on Sept 22, the first day of fall, the temps were in the mid 70's where they have remained. I have given you this lesson in our weather as evidence of thing that may yet come.
When I came to know that I would die during a big snowfall, I figured that I had several years left as there were no signs of our weather changing anytime soon. But now the signs seem to be falling into place. My breathing has continued to worsen, fluid continues to build around my lung - even when they drained 1500 cc off one day, 3 days later it was back. That was Aug 4th - I was admitted to the hospital for what was suppose to be a simple procedure to stop the build up of fluid and would only be there a few days. That few days turned into month - shy 4 days. While there, they found a new tumors on my spine, a rib and 2 lymph nodes near areas where they good cause problem. It was also concluded that my pleural membrane was one big tumor - oh yes - my chemo had obviously quit working.
Now I have started a new chemo, the last one before we have to go back to the seriously toxic drugs, and there seems to be signs that this new chemo is not working. I know from my experience as an oncology nurse that thing can look fine one week and fall all to hell the next. Again I tell you that the signs seem to be falling into place. And as for the weather - this is first time in years that there is even a reasonable possibility that we could have a really good snowfall. I hope I am wrong - I would really like to stay around for a few more years, but if I could choose my time to go, it indeed would be during a big beautiful, silent snowfall - I can't think of anything more peaceful.
Even if I am wrong about it being this year, I do realize that my time is running out. When this chemo fails, be next it month or next year, I do not want to go through what I went through when I was first dx. At least then I knew I only had to endure 4 treatment - I could count down the months of misery. This time it will be until it works no more or the chemo it's self kills me.
Sunday, September 14, 2008
Plain & Simple
I sat in the tub last night feeling the effects of a potential new problem - compression fraction at T8 - I didn't cry, didn't think of any insightful meaning from this new set of problems, I could only keep repeating to myself, " I just can't believe this is happening to me, I never expected to have cancer! " I just can't believe this!" " Why me?"
Sometimes, for all the thought, faith, prayer, and analysis that you but into understanding this dammed disease and the life it will over come, it all come back to 'Why me?" Plain and simple
Sometimes, for all the thought, faith, prayer, and analysis that you but into understanding this dammed disease and the life it will over come, it all come back to 'Why me?" Plain and simple
Friday, September 12, 2008
The Need to Belong
The last time I can remember feeling like I belonged was when I lived with Dee (my grandmother). I was only six when I left her and even if I was living with mom in Highlands it somehow never felt right, somehow I knew I was the 5th wheel. It didn’t seem to matter if mom was dating someone, living with a man, or crying over one - somehow I felt/knew that I wasn’t the important one in her life.
As I got older and especially if I was living anywhere but Highlands, the feeling of not belonging grew and grew. Even in Highlands I never had more than one friend at a time, sometimes two. Beth Edwards and Herbie Potts. They had been there longer than us by 20 years or more. Then there was Brenda and Kathy Henry, they were native to the land - literally, the dad was Cherokee. The point of this is to say - that for all the years I spent in Highlands, every summer until I was 10, plus the first 6 years of my life and several full years afterwards, those are the only names of children that I remember. Part of this is to be expected as Highlands was a tourist town and the population exploded by 30 or 40 thousand during the summer. Still, there were enough kids to build a school and even though the school went from 1st grade to 12th all of the lower grade had enough kids to make two classes.
I remember 3rd and 5th grade being OH so lonely, ( I don’t remember 4th grade at all) I really can’t recall even one friend in 3rd grade. Midway through 5th grade a Girl, Brenda, moved into the apt. right behind us - we were back yard neighbors and fast friends. We shared so much in common - children of divorced parents which meant working moms, poor, we both felt like misfits and were treat as such, and though we didn’t realize it then, both of us had past molestations if not continuing, but most importantly - we both knew everyone of our peer thought we were ugly - we thought we were ugly. I can’t remember anyone ever telling me I was beautiful, cute, anything of the such with the exception of Dee. Anyway Brenda was my age but a year ahead of me in school so we went to different schools. That didn’t matter we still found plenty of trouble to get into ( more on this later). All gppd things come to an end - she moved away, mom married and we moved here- to Winston Salem- but not before we met long haired freaky people. Hippies - we finally belonged and felt right at home.
My teenage years didn’t get any better on the inside, but on the outside I was having a blast. I was one of only a few “hippies” in the whole of middle school, other kids looked up to me, some were afraid of me - they thought I may have some kind of disease, but secretly, some of them thought I cool. I quickly fell and fit into a much older group. By the time I reached 14 I had overdosed on LSD, hitchhiked to LA, been in training school , begged to be placed in the Children’s home, almost given up on life completely, and had made several suicide attempts. Somehow, for some still unknown reason, I held on.
Life as it most often does went own and own as did the pain, fear, sadness, and molestation - different men same old shit. And the anger, it got deeper, meaner, and more uncontrollable. Even after I married I continued to be psychologically abused by my mother. I married had children, failed at motherhood for the first 7 years, maybe longer. Still only had one, maybe 2 friends at a time, hated going to parties if I didn’t know most people there, didn’t want to be around groups of adults like Sunday school or even Tim’s family ( somehow our friends didn’t count as adults). I was absolutely terrified of sounding dumb, saying the wrong thing, or embarrassing myself in some other horrible way. And now another even more devastating emotion was creeping in - self hatred .
As I got older and especially if I was living anywhere but Highlands, the feeling of not belonging grew and grew. Even in Highlands I never had more than one friend at a time, sometimes two. Beth Edwards and Herbie Potts. They had been there longer than us by 20 years or more. Then there was Brenda and Kathy Henry, they were native to the land - literally, the dad was Cherokee. The point of this is to say - that for all the years I spent in Highlands, every summer until I was 10, plus the first 6 years of my life and several full years afterwards, those are the only names of children that I remember. Part of this is to be expected as Highlands was a tourist town and the population exploded by 30 or 40 thousand during the summer. Still, there were enough kids to build a school and even though the school went from 1st grade to 12th all of the lower grade had enough kids to make two classes.
I remember 3rd and 5th grade being OH so lonely, ( I don’t remember 4th grade at all) I really can’t recall even one friend in 3rd grade. Midway through 5th grade a Girl, Brenda, moved into the apt. right behind us - we were back yard neighbors and fast friends. We shared so much in common - children of divorced parents which meant working moms, poor, we both felt like misfits and were treat as such, and though we didn’t realize it then, both of us had past molestations if not continuing, but most importantly - we both knew everyone of our peer thought we were ugly - we thought we were ugly. I can’t remember anyone ever telling me I was beautiful, cute, anything of the such with the exception of Dee. Anyway Brenda was my age but a year ahead of me in school so we went to different schools. That didn’t matter we still found plenty of trouble to get into ( more on this later). All gppd things come to an end - she moved away, mom married and we moved here- to Winston Salem- but not before we met long haired freaky people. Hippies - we finally belonged and felt right at home.
My teenage years didn’t get any better on the inside, but on the outside I was having a blast. I was one of only a few “hippies” in the whole of middle school, other kids looked up to me, some were afraid of me - they thought I may have some kind of disease, but secretly, some of them thought I cool. I quickly fell and fit into a much older group. By the time I reached 14 I had overdosed on LSD, hitchhiked to LA, been in training school , begged to be placed in the Children’s home, almost given up on life completely, and had made several suicide attempts. Somehow, for some still unknown reason, I held on.
Life as it most often does went own and own as did the pain, fear, sadness, and molestation - different men same old shit. And the anger, it got deeper, meaner, and more uncontrollable. Even after I married I continued to be psychologically abused by my mother. I married had children, failed at motherhood for the first 7 years, maybe longer. Still only had one, maybe 2 friends at a time, hated going to parties if I didn’t know most people there, didn’t want to be around groups of adults like Sunday school or even Tim’s family ( somehow our friends didn’t count as adults). I was absolutely terrified of sounding dumb, saying the wrong thing, or embarrassing myself in some other horrible way. And now another even more devastating emotion was creeping in - self hatred .
Windmills and Pinwheels
My mind is ever on, sometimes like a child’s pinwheel held out the car window on the way home from the grocery store. Alternating moments of color and brilliance - like the silver shinny side of the pinwheel. Other times my mind moves at a slower pace, reminding me of old photos I’ve seen of Dutch windmills. Either way my mind is ever spinning.
As long as I can remember this has been true. As a young child it spun slowly with play, wonderment, and fantasy . A little older and the pinwheel effect was turned on when fantasy and fun turned to fear and sadness as I was removed from my home, my childhood, my Dee, and made to live with my mom. ( A whole other story ) In my 20’s my mind just spun it’s wheel, spinning faster and faster trying to figure out my past - the abuses of body, mind and spirit I had tolerated most of my life. Finally in my 30’s, with the help of intensive therapy my mind began to slow. It slowed enough to so that things could fall in to place, into appropriate places. I was finally at a place and pace in my own mind that I could not only survive I could thrive.
Thrive I did. Layer by layer the old moldy past was peeled away, examined, and filed justly - at least for the moment. Over the years some of those layers have been looked at again and again, each time with a fresh eye, new strengths, new insight, new understanding, and plain and simple - each time I had grown up a little bit more.
It is most certain that conclusions reached in the past and even my most recent conclusions will change the next time they are looked at. However, because of my medical problems, it is not likely that I will continue to have the energy, nor the time to revisit many more layers. Because of this I wanted to get on paper some type of record of me and how I viewed my life in my own words.
As long as I can remember this has been true. As a young child it spun slowly with play, wonderment, and fantasy . A little older and the pinwheel effect was turned on when fantasy and fun turned to fear and sadness as I was removed from my home, my childhood, my Dee, and made to live with my mom. ( A whole other story ) In my 20’s my mind just spun it’s wheel, spinning faster and faster trying to figure out my past - the abuses of body, mind and spirit I had tolerated most of my life. Finally in my 30’s, with the help of intensive therapy my mind began to slow. It slowed enough to so that things could fall in to place, into appropriate places. I was finally at a place and pace in my own mind that I could not only survive I could thrive.
Thrive I did. Layer by layer the old moldy past was peeled away, examined, and filed justly - at least for the moment. Over the years some of those layers have been looked at again and again, each time with a fresh eye, new strengths, new insight, new understanding, and plain and simple - each time I had grown up a little bit more.
It is most certain that conclusions reached in the past and even my most recent conclusions will change the next time they are looked at. However, because of my medical problems, it is not likely that I will continue to have the energy, nor the time to revisit many more layers. Because of this I wanted to get on paper some type of record of me and how I viewed my life in my own words.
Thursday, September 11, 2008
Breaking Thuough Writers Block
I haven’t done a very good job at keeping up with my blog or even my journal. Often, I feel most like writing when I’m angry with someone or the whole world. If I only write during those times, then my life appears to be filled with anger and self pity. But most importantly, those words, those simple symbols we use to convey information, thoughts and feelings can be so devastating when read out of context or without explanation.
I want to share myself, my story, my life - all of it, not just the angry painful times. My story is more about survival than death and grief, more about adventure than the everyday routine, and more about self discovery and hopefully the accumulation of wisdom.
The emotional expense, relief, or revelation of the many stories, thoughts, and observation are so brilliantly clear to me. I know exactly what I want to say, but once I touch pen to paper, the process of sharing information comes to a halt. My idea suddenly seem blurred, unimportant, silly, dumb or foolish. I become afraid of sharing , of being seen as immature or just plain stupid.
So………… I have become aware of “writers block” and now am finally, little by little, hammering through it’s wall.
I want to share myself, my story, my life - all of it, not just the angry painful times. My story is more about survival than death and grief, more about adventure than the everyday routine, and more about self discovery and hopefully the accumulation of wisdom.
The emotional expense, relief, or revelation of the many stories, thoughts, and observation are so brilliantly clear to me. I know exactly what I want to say, but once I touch pen to paper, the process of sharing information comes to a halt. My idea suddenly seem blurred, unimportant, silly, dumb or foolish. I become afraid of sharing , of being seen as immature or just plain stupid.
So………… I have become aware of “writers block” and now am finally, little by little, hammering through it’s wall.
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