I stopped a negative thought in its tracks this morning.
I was thinking about getting back to ordinary life and I got all upset and depress. I have been asking for help to try and make work, which can be boring at time, more exciting or at least something I got more excited about. I really was feeling a little blue about this when I realized that I put such a negative vibe around the word "ordinary".
Well, lets face it, ordinary isn't an exciting word. So of course I had to look the word up. Ordinary: well there are 4-5 definitions - but there is some hope for this word. Other than meaning customary, usual, normal, fixed, relatively unvarying - it can be an official having jurisdiction within a specific area or it can be a set meal served regularly at the same price. But what I like is where the word came from - ordinarius - latin for overseer, orderly, regular. Well I like the order part of this word.
So, now back to stopping the negative ordinary and get to some kind of exciting. I was using ordinary to mean dull, unadventurous, routine and I don't want to return to an ordinary life. So I started thinking about the word exciting - how to be excited, how to see the exciting in the ordinary, how to make the boring exciting and just by making that small shift in thinking the negative talk in my head stopped and I felt much more hopeful and cheerful.
While it may not seem that things are exciting but they really more ordinary - it us who gets to chose how we think about things. It is we who give the positive or negative vibe to life - and we chose which one to practice even by the words we use and how we use those words.
Monday, August 30, 2010
Sunday, August 29, 2010
feeling like a new butterfly
Last night I felt like a Queen, well this morning I feel like a vulnerable butterfly just coming out of it's chrysalis. I woke up this morning with a double wammy - migraine headache and panic attack! First turn off the bad news - turn on my healing music. Take some medicine. Then keep thinking of the beautiful butterfly - yes a little shaky - wings no yet ready to fly - but willing to let them dry in the warm sunlight. I have been thinking about writing down those dreams - getting them out of head and on to paper - well into my blog. More later - I am off to help someone move.
Have a wonderful day filled with the miracles of little butterflies.....
Have a wonderful day filled with the miracles of little butterflies.....
Saturday, August 28, 2010
I feel like a regal Queen
I feel strong and positive. I have been telling myself all day that I made it through, not just the scan, but through beating cancer. This feel more like an important crossing of a threshold then coming through the surgery. I feel stronger and more positive now then I did 6 months ago after my surgery. I know this past 6 months has allowed me to deal with issues that I need to deal with and I really feel like I have crossed a river into new territory today. I spent my day just taking it easy - cleaned my apartment and had dinner with a friend and watched a movie. All day I rested and for the first time in a long time I mind felt a rest. I really feel I can look to the future with hope and a positive feeling. There is some trepidation in the unknown in passing from fighting cancer to living life I believe with less fear and more positive hope - trepidation being unsure of what those positive changes will bring and coming to see the fight with cancer as the a crucible of blessings that will be played out in the future. I think in my next blog entry I will do a little dreaming for what I hope for in the future.
Until then I will continue to feel like a Queen - in command of a strong positive person.
Until then I will continue to feel like a Queen - in command of a strong positive person.
The scan went okay
As I write you this evening I am listening to the Moody Blues and feeling strong and positive - like a Queen.
So - most of you know the CT scan went okay. For those who I forgot to send an email I am sorry - but here you get the whole story. I feel like writing about it in detail because I feel like I finally got it right from advocating for myself and following up to getting through the scan with only a little upset. I guess I am trying to create a good pattern that I know I can repeat in the future so I can maybe conquer this fear and create a positive expereince to remember in the future. By little steps I am getting there.
I got numbing creme from the when the tech put in the needle in my arm. I talked to the tech the day before to explain things so he had some understanding what I needed. So when I got to the testing place I talked to the tech and he put on the creme. Cathy and I waited a little while and she kept me distract by asking me all kinds of things witchy - like meeting the coven earlier in the week. Cathy forgive me being a little curt or short with my answers - it is sometimes strange to talk about witchy things in a public place - I think next to talking about cancer - I don't often talk about being a witch. Well, I digress, back to the story. A little before going into the scanner I did take a anti-anxiety pill. The tech called for me and I got changed - into a gown that barely covered me - nothing like all my jiggly parts peaking out! Before going into the scanning room I asked if he could get my sister so she could hold my hand as he put in the IV. I looked at me like this was a silly idea and kind of scowled at me, but he said yes. Damn they keep those testing place COLD! FREEZING! So up on to the table that slides into the scanner and he gave me a nice blanket. Then he started taking out all the things for the IV and that is when I started to fall apart/cry/freak out. I asked him to get my sister because I was starting to cry and lose it and he did after he got things set up. Luckily I was laying down on the table so I couldn't see any of the IV things and when he put in the needle I could see it either because my arm hung down off the table. If this is the way he does his scans - it is genius for me. I didn't have to close my eyes even though I did at first when I started to freak out. I kept telling my self "just breathe - in - out - just breathe - slowly - in - out". Cathy came in and talked to me about her grandson Bruno and then she got on to the subject of the Red Soxes - I had to tease her a little about where the Yankees were in the standings compared to the Red Soxes - we laughed a little about that - and by that time the needle was in.
The scan really took very little time and I didn't keep my eyes closed while in the scnanner except for once when I opened them - but just for a second. I don't know it seemed that the scans in the past lasted my longer - this one was over in minutes. He took out the needle and up I got from the table and I and my barely covered jiggly parts went back to the changing room. He did comment to me that sometimes we make things bigger then they really are. I know my fear of needles is irrational - but it is there and I have to find ways to address it, acknowledge it and then to heal it. I think the generally over all good experience that this was is a scan and IV needles process that moves in the right direction.
After the scan Cathy and I did a little shoe shopping with both Shoe Mania and DSW on our way my favorite diner on 14th street where we had blueberry pancakes! Cathy did see me all the way home as I was feeling really tired and kind of spacy. We took care of some food shopping and I dealt with some library books before she headed out of the city. Thank you so much Cathy, for holding my hand and distracting me and being with me for that 24 hours. It was such a huge help. We had some good sister time.
So - most of you know the CT scan went okay. For those who I forgot to send an email I am sorry - but here you get the whole story. I feel like writing about it in detail because I feel like I finally got it right from advocating for myself and following up to getting through the scan with only a little upset. I guess I am trying to create a good pattern that I know I can repeat in the future so I can maybe conquer this fear and create a positive expereince to remember in the future. By little steps I am getting there.
I got numbing creme from the when the tech put in the needle in my arm. I talked to the tech the day before to explain things so he had some understanding what I needed. So when I got to the testing place I talked to the tech and he put on the creme. Cathy and I waited a little while and she kept me distract by asking me all kinds of things witchy - like meeting the coven earlier in the week. Cathy forgive me being a little curt or short with my answers - it is sometimes strange to talk about witchy things in a public place - I think next to talking about cancer - I don't often talk about being a witch. Well, I digress, back to the story. A little before going into the scanner I did take a anti-anxiety pill. The tech called for me and I got changed - into a gown that barely covered me - nothing like all my jiggly parts peaking out! Before going into the scanning room I asked if he could get my sister so she could hold my hand as he put in the IV. I looked at me like this was a silly idea and kind of scowled at me, but he said yes. Damn they keep those testing place COLD! FREEZING! So up on to the table that slides into the scanner and he gave me a nice blanket. Then he started taking out all the things for the IV and that is when I started to fall apart/cry/freak out. I asked him to get my sister because I was starting to cry and lose it and he did after he got things set up. Luckily I was laying down on the table so I couldn't see any of the IV things and when he put in the needle I could see it either because my arm hung down off the table. If this is the way he does his scans - it is genius for me. I didn't have to close my eyes even though I did at first when I started to freak out. I kept telling my self "just breathe - in - out - just breathe - slowly - in - out". Cathy came in and talked to me about her grandson Bruno and then she got on to the subject of the Red Soxes - I had to tease her a little about where the Yankees were in the standings compared to the Red Soxes - we laughed a little about that - and by that time the needle was in.
The scan really took very little time and I didn't keep my eyes closed while in the scnanner except for once when I opened them - but just for a second. I don't know it seemed that the scans in the past lasted my longer - this one was over in minutes. He took out the needle and up I got from the table and I and my barely covered jiggly parts went back to the changing room. He did comment to me that sometimes we make things bigger then they really are. I know my fear of needles is irrational - but it is there and I have to find ways to address it, acknowledge it and then to heal it. I think the generally over all good experience that this was is a scan and IV needles process that moves in the right direction.
After the scan Cathy and I did a little shoe shopping with both Shoe Mania and DSW on our way my favorite diner on 14th street where we had blueberry pancakes! Cathy did see me all the way home as I was feeling really tired and kind of spacy. We took care of some food shopping and I dealt with some library books before she headed out of the city. Thank you so much Cathy, for holding my hand and distracting me and being with me for that 24 hours. It was such a huge help. We had some good sister time.
Monday, August 23, 2010
You must think I am taking forever to figure this out
I most certainly have tested your patience of the last year. From tears and crying - being scared and angry to hope and being positive. Well, life is all about the journey and not the destination. So I figured I would take a chance to list for myself and for you some of the things I continue to try to learn and pratice.
To give myself space and time - not to be so tight or constrained or worried about getting something done
To draw my boundaries for me - to speak up for myself
To continue to seek and get support for living and expand my network of friends - expand my social network
To be aware of mothering and caring for me
To speak my truth
To claim my boundaries/my Goddess/my masculine side
Doing takes practice - so keep practicing
Following my passion - happiness
Be grateful all blessings - stay positive - look for miracles -
expressing my feeling - especially if someone angers or hurts me - Bring honest with others about my feelings - don't let it stew
connecting with women who see things similar to me is important
expressing my celtic spirituality
Bring my Goddess energy forward - use it creatively
I will live life more boldly and to remain open to life - What kind of life do I want to lead - What are my honest expectations - adjusting them
To give myself space and time - not to be so tight or constrained or worried about getting something done
To draw my boundaries for me - to speak up for myself
To continue to seek and get support for living and expand my network of friends - expand my social network
To be aware of mothering and caring for me
To speak my truth
To claim my boundaries/my Goddess/my masculine side
Doing takes practice - so keep practicing
Following my passion - happiness
Be grateful all blessings - stay positive - look for miracles -
expressing my feeling - especially if someone angers or hurts me - Bring honest with others about my feelings - don't let it stew
connecting with women who see things similar to me is important
expressing my celtic spirituality
Bring my Goddess energy forward - use it creatively
I will live life more boldly and to remain open to life - What kind of life do I want to lead - What are my honest expectations - adjusting them
What am I fighting for and Harry Potter
I drink Yogi tea every day - usually at work. Their tea bags always have some wise saying - and here is today's "Live in your strength" - right on.
Okay with all of this positive warrior stuff where does Harry Potter come in. Well, I love the books and movies. The possibility of magic - the imagination - but also that bad things happen to good people and good people can be good earnest warriors fighting a hard fight. Courage is doing what has to be done - but we can do that in a positive way. At the end of one of these movies one of the lines is "We have something to fight for" and that really struck me. So I asked myself "What am I fighting for?"
I don't think I have ever address this question, at least not in such a direct way. And I find it amusing that I am talking about it now versus when this cancer journey began. I know in the beginning I remember making a conscience desicion that I was going to try to be a positive as I could - but as I also remember - I was pretty freaked out about this whole thing. I think I will go back and look at what I wrote.
So here is what I am fighting for. I am fighting for the chance to be positive - to make this my way of living. I am fighting for the opportunity to give back - via Red Tent or my church or some other way that I am not aware of yet. I am fighting for a chance to celebrate my spirituality with like minded people to see what it like to be in a coven. I am fighting for my happiness. I am still trying to discover what that is. I am fighting for a change to create a life full of love and support - I want a life overflowing with it - including a man who loves for who and what I am. I am fighting for the chance to travel, to see parts of the world that are important to me. I am fighting for a chance to see more beauty and laughter and miracles. I am fighting for the chance to have a family of my own that will be untraditional. I am fighting for a chance to laugh more, be happy, surround myself with supportive wonderful friends and family. I am fighting to create - moon cirlces, jewelery, paintings, poems. I am fighting to share me - my hopes, ideas, dreams, pet peeves, weaknesses, even failures. As some of the positive thinking gurus say - "For some good to happen to me" no matter how small and magical. I am fighting to be passionate both again and for the first time.
Fighting for my life - for the life - to be positive and loved - and especially naming these things - really putting them out there for others to see and hear is giving me more self confidence and hope.
I have looking at facebook today - it is a way for me to see what is happening on other's lives, especially my nieces and nephews. I came across two postings, one about doing things that make you happy by an author I like Anne Lamont
http://www.sunset.com/travel/anne-lamott-how-to-find-time-00418000067331/
and an interview about a book on happiness. Along with reading all kinds of stories about cancer, I find myself drawn at this time to things about happiness and being positive. Here is the interview from NPR:
http://www.npr.org/templates/story/story.php?storyId=129379708
Okay with all of this positive warrior stuff where does Harry Potter come in. Well, I love the books and movies. The possibility of magic - the imagination - but also that bad things happen to good people and good people can be good earnest warriors fighting a hard fight. Courage is doing what has to be done - but we can do that in a positive way. At the end of one of these movies one of the lines is "We have something to fight for" and that really struck me. So I asked myself "What am I fighting for?"
I don't think I have ever address this question, at least not in such a direct way. And I find it amusing that I am talking about it now versus when this cancer journey began. I know in the beginning I remember making a conscience desicion that I was going to try to be a positive as I could - but as I also remember - I was pretty freaked out about this whole thing. I think I will go back and look at what I wrote.
So here is what I am fighting for. I am fighting for the chance to be positive - to make this my way of living. I am fighting for the opportunity to give back - via Red Tent or my church or some other way that I am not aware of yet. I am fighting for a chance to celebrate my spirituality with like minded people to see what it like to be in a coven. I am fighting for my happiness. I am still trying to discover what that is. I am fighting for a change to create a life full of love and support - I want a life overflowing with it - including a man who loves for who and what I am. I am fighting for the chance to travel, to see parts of the world that are important to me. I am fighting for a chance to see more beauty and laughter and miracles. I am fighting for the chance to have a family of my own that will be untraditional. I am fighting for a chance to laugh more, be happy, surround myself with supportive wonderful friends and family. I am fighting to create - moon cirlces, jewelery, paintings, poems. I am fighting to share me - my hopes, ideas, dreams, pet peeves, weaknesses, even failures. As some of the positive thinking gurus say - "For some good to happen to me" no matter how small and magical. I am fighting to be passionate both again and for the first time.
Fighting for my life - for the life - to be positive and loved - and especially naming these things - really putting them out there for others to see and hear is giving me more self confidence and hope.
I have looking at facebook today - it is a way for me to see what is happening on other's lives, especially my nieces and nephews. I came across two postings, one about doing things that make you happy by an author I like Anne Lamont
http://www.sunset.com/travel/anne-lamott-how-to-find-time-00418000067331/
and an interview about a book on happiness. Along with reading all kinds of stories about cancer, I find myself drawn at this time to things about happiness and being positive. Here is the interview from NPR:
http://www.npr.org/templates/story/story.php?storyId=129379708
Turning fear to positive
I am not quite sure what to title this mornings blog. Here is what is in the running
Positive Warrior
Lessons from Harry Potter
You must think I am taking forever to figure this out
Choosing the positive
Turning fear to positive
So maybe your are thinking how do I tie together all these ideas. Well maybe it takes a walk through my weekend to know how I got from point A to point B.
Lets start with Friday - complete meltdown. I was get scared about this coming Friday LAST Friday! With encouragement and gentle proding from Prisiclla I turned the corner - got the car going in the right direction again and created a visualization for myself. I visualized this COMING Friday as a journey from when I woke up to when I got through the test all with a positive aura around it - that this test would go easily for me. Like a movie I moved through getting up - gettting
dressed - having no breakfast - talking to my sister - both of us walking out the door - down the street - up the stairs to the subway - on to the train - all this whiel I am calm and focused - not afraid at all - off the 7 at Grand Central and switch to the 4-5-6. Getting off at Union Square. Meeting Priscilla. Going into the testing place - down the elevator - checking in - telling them about issue with needles and to have something topical to numb the skin - sitting and waiting - I don't see me chatting but just quiet and focused and unafraid - I do have to tell both of you that you need to tell me to breathe - let me hold your hand - I may hold it hard - getting up with my sister and getting ready for the test. Getting changed into the silly gowns - bringing my pink robe with me - now getting the IV put in - the band to make the vein "pop" - the alcohol - the numbing stuff - close my eyes - I hear my sister telling me to keep breathing in and out - in and out - and the needle just goes in like butter - I don't really feel it - they find a good vein no problem - and then depending on what the doctor wants - the barium chalk drink and waiting for it to work into my system. Then the test itself. Asking for music - remember to breathe - just say the mantra - breathe in - breath out. Getting up on the table the slides into the scanner and close my eyes - don't watch what the machine is doing - and listen to the techs instructions. Sooner than I think It is over and they are helping me off the table. I get change and meet Cathy and Priscilla and we go to eat - for me it will be breakfast!
Okay so I have walked you through my positive visualization. I feel better and empowered for having done this. I feel it now as I write it for you. But my story doesn't end there.
So now to the other stuff! The Positive Warrior. As I have been thinking about this over the past weekend I felt this Positive Warrior grow strong in me - it took the scared little me under its sheild. My Warrior didn't banish the fear or negate it, but rather accepted it for what it was and comforted it. The fear maybe still there, but protected by the Positive Warrior. It feels like I have positive armour on and that I know good things are happening and will happen. I guess the Warrior in my told the scared little me - it is time to stop being scared - to - in a sense suck it up and chose the best way to get through this - I want it to be as positive as possible so my visualization and warrior self with armour and sheild I am creating that positive possibility - that positive little miracle for me.
I am going to keep this positive thread going by addressing the other titles in other posts - so you aren't spending your day reading my weekend warrior story - so more tomorrow.....
Positive Warrior
Lessons from Harry Potter
You must think I am taking forever to figure this out
Choosing the positive
Turning fear to positive
So maybe your are thinking how do I tie together all these ideas. Well maybe it takes a walk through my weekend to know how I got from point A to point B.
Lets start with Friday - complete meltdown. I was get scared about this coming Friday LAST Friday! With encouragement and gentle proding from Prisiclla I turned the corner - got the car going in the right direction again and created a visualization for myself. I visualized this COMING Friday as a journey from when I woke up to when I got through the test all with a positive aura around it - that this test would go easily for me. Like a movie I moved through getting up - gettting
dressed - having no breakfast - talking to my sister - both of us walking out the door - down the street - up the stairs to the subway - on to the train - all this whiel I am calm and focused - not afraid at all - off the 7 at Grand Central and switch to the 4-5-6. Getting off at Union Square. Meeting Priscilla. Going into the testing place - down the elevator - checking in - telling them about issue with needles and to have something topical to numb the skin - sitting and waiting - I don't see me chatting but just quiet and focused and unafraid - I do have to tell both of you that you need to tell me to breathe - let me hold your hand - I may hold it hard - getting up with my sister and getting ready for the test. Getting changed into the silly gowns - bringing my pink robe with me - now getting the IV put in - the band to make the vein "pop" - the alcohol - the numbing stuff - close my eyes - I hear my sister telling me to keep breathing in and out - in and out - and the needle just goes in like butter - I don't really feel it - they find a good vein no problem - and then depending on what the doctor wants - the barium chalk drink and waiting for it to work into my system. Then the test itself. Asking for music - remember to breathe - just say the mantra - breathe in - breath out. Getting up on the table the slides into the scanner and close my eyes - don't watch what the machine is doing - and listen to the techs instructions. Sooner than I think It is over and they are helping me off the table. I get change and meet Cathy and Priscilla and we go to eat - for me it will be breakfast!
Okay so I have walked you through my positive visualization. I feel better and empowered for having done this. I feel it now as I write it for you. But my story doesn't end there.
So now to the other stuff! The Positive Warrior. As I have been thinking about this over the past weekend I felt this Positive Warrior grow strong in me - it took the scared little me under its sheild. My Warrior didn't banish the fear or negate it, but rather accepted it for what it was and comforted it. The fear maybe still there, but protected by the Positive Warrior. It feels like I have positive armour on and that I know good things are happening and will happen. I guess the Warrior in my told the scared little me - it is time to stop being scared - to - in a sense suck it up and chose the best way to get through this - I want it to be as positive as possible so my visualization and warrior self with armour and sheild I am creating that positive possibility - that positive little miracle for me.
I am going to keep this positive thread going by addressing the other titles in other posts - so you aren't spending your day reading my weekend warrior story - so more tomorrow.....
Friday, August 20, 2010
Mind over fears with the help of friends and little yellow pills
The fears do come crashing down on me with such emotion that it is hard to think straight. They overwhelm my system to point where I want to fall apart and their strength leaves them hard to name. But they must be named to conquer them.
Thank heavens to good friends who can help me think and to face the fears and keep me from completely falling apart. The gentle and understanding pep-talks - Priscilla you are so good at this. You listen to the fears and tears - you know they need to come out, need to have their expression - get them out of the system - and then you talk of facing those fears and gain control over the situation by taking the teeth out of those fear monsters by imaging what is the worst that can happen and knowing that it isn't going to be that way. Now I sit here and cry in thankfulness that you can help me do this and you have the patience with me. All of you do - by listening to me here. And I have to give a shout out to Lynne who keeps encouraging me to write because she like my writing style and compliments my ability to put all of this into words that slowly reveals myself not just to you but to my as well.
So okay - the CT scan is coming up next Friday. I have talked my fears out with Priscilla - but I thought it would be a good form of therapy to write them out as well. Another avenue or form of conquering the fears and bringing them out into the light. When the fears are in the darkness they have some control, but when a light is shone on them by talking about them in some way, they lose their control - they become toothless monsters. It is funny - as I started writing this post I couldn't help think of masks - looking at these fears as frightening masks and laughing at them. I don't know if I have this right but the phrase "Kabuki masks" came to mind with their exaggerated features. I know in my artwork I have draw masks as a way of facing my fear - maybe that is something I could tackle this weekend as a more intuitive/organic/creative way of facing the fears.
So what are the fears - and the worst case scenario:
Needles - just getting it into my arm - fishing around for a vein - It feels like an invasion that I intuitively want to fight - debunk: They know what they are doing. They are trying not to hurt me. They are not hurting me
CT machine - claustraphobia - feels very tight - feels like I am in a coffin debunk: it is a machine - it isn't going to crush me - it is open at both ends - just keep your eyes closed.
being scared - I am actually scared of being too upset - that I will be an emotional wreck unable to get through it - debunk: - this hasn't happened so far - why should it happen now.
Waiting - for the test to get going - that it will take them hours to get this test done debunk: I will have hands to hold and friends and sisters to remind me of my mantras and how easy and well this will go - and we can talk about other things. I can even take a book to read for distraction.
So now that I have said them - what mantras/strategies can I use to defang these fears.
- Well, you know I love the creative part - poetry - artwork - especially using words to conquer the fear. I will let you know what I come up with
- Creating mantras to tell myself over the next week. I will get through this okay. They are not trying to hurt me. Relax let them take care of you - they are professionals they know what they are doing - close my eyes while in the CT scanner - Do meditations and visualization when ever necessary - visualize myself how calmly I am going to get through this scan - with dignity and strength and spiritual calmness - I see myself like a radiant queen filled with joy, happiness and calm.
Lastly I do have the little yellow anti-anxeity pills that I try not to take - but when it is overwhelming - they do help.
Thank heavens to good friends who can help me think and to face the fears and keep me from completely falling apart. The gentle and understanding pep-talks - Priscilla you are so good at this. You listen to the fears and tears - you know they need to come out, need to have their expression - get them out of the system - and then you talk of facing those fears and gain control over the situation by taking the teeth out of those fear monsters by imaging what is the worst that can happen and knowing that it isn't going to be that way. Now I sit here and cry in thankfulness that you can help me do this and you have the patience with me. All of you do - by listening to me here. And I have to give a shout out to Lynne who keeps encouraging me to write because she like my writing style and compliments my ability to put all of this into words that slowly reveals myself not just to you but to my as well.
So okay - the CT scan is coming up next Friday. I have talked my fears out with Priscilla - but I thought it would be a good form of therapy to write them out as well. Another avenue or form of conquering the fears and bringing them out into the light. When the fears are in the darkness they have some control, but when a light is shone on them by talking about them in some way, they lose their control - they become toothless monsters. It is funny - as I started writing this post I couldn't help think of masks - looking at these fears as frightening masks and laughing at them. I don't know if I have this right but the phrase "Kabuki masks" came to mind with their exaggerated features. I know in my artwork I have draw masks as a way of facing my fear - maybe that is something I could tackle this weekend as a more intuitive/organic/creative way of facing the fears.
So what are the fears - and the worst case scenario:
Needles - just getting it into my arm - fishing around for a vein - It feels like an invasion that I intuitively want to fight - debunk: They know what they are doing. They are trying not to hurt me. They are not hurting me
CT machine - claustraphobia - feels very tight - feels like I am in a coffin debunk: it is a machine - it isn't going to crush me - it is open at both ends - just keep your eyes closed.
being scared - I am actually scared of being too upset - that I will be an emotional wreck unable to get through it - debunk: - this hasn't happened so far - why should it happen now.
Waiting - for the test to get going - that it will take them hours to get this test done debunk: I will have hands to hold and friends and sisters to remind me of my mantras and how easy and well this will go - and we can talk about other things. I can even take a book to read for distraction.
So now that I have said them - what mantras/strategies can I use to defang these fears.
- Well, you know I love the creative part - poetry - artwork - especially using words to conquer the fear. I will let you know what I come up with
- Creating mantras to tell myself over the next week. I will get through this okay. They are not trying to hurt me. Relax let them take care of you - they are professionals they know what they are doing - close my eyes while in the CT scanner - Do meditations and visualization when ever necessary - visualize myself how calmly I am going to get through this scan - with dignity and strength and spiritual calmness - I see myself like a radiant queen filled with joy, happiness and calm.
Lastly I do have the little yellow anti-anxeity pills that I try not to take - but when it is overwhelming - they do help.
panic setting in
Good morning
Just a quick note to say the fear and panic are starting. I am trying to use all my tools, but sometimes it is hard.
C.
Just a quick note to say the fear and panic are starting. I am trying to use all my tools, but sometimes it is hard.
C.
Thursday, August 19, 2010
a quick update
I talked with a mutal and very dear friend last night who help but things in a little prespective. It helps me to forgive a little more and for now will just leave things alone.
That is all for now
from Carolyn "NED"
That is all for now
from Carolyn "NED"
Wednesday, August 18, 2010
Yesterday's NY Times article
I have to confess, yesterday's NY Times article on how others cope with a friends/family members crisis has touched a nerve in me.
I have been thinking, over the last few days, about my friend that stayed with me. Please forgive me for rehashing this some, but I feel this article may give me some clue as to her behavior - though I had an inkling when I called and tried to talk to her and then her strong reaction to one of my poems. While the article gives me clue - it doesn't bring me closer to forgiving or healing. I really want to hear "I am sorry - I wasn't there in the way you needed and I am sorry that hurt you" - at least that is some acknowledgement that her actions effected me. This maybe small consolation but she does acknowledged she tried and her strong reaction to my poem indicates to me that she knows something was wrong whether she is willing to admit her part in this or not. In thinking back - it is almost as if she were angry at me for getting cancer and then trying to put all the blame back on me, bullying me to get my life back to normal so she didn't have to worry anymore. All I am trying to do is understand how the hurt happened and give her some allowance. While I can give her a little allowance it this was the coping mechanism in play but I just can't forgive that right now. The simple acknowledgement of what happened and I am sorry would have been enough to set things right. Better yet, it would have been better if she acknowledged that she couldn't do this at all - that it was too much for her to handle - at least I could have better arrangements - well we know what happened there. In reality I know that no acknowledgement or saying I am sorry is likely forthcoming and so I hurt and now mourn the change and possible end of a friendship. Honestly I am still ambivalent on that point - or maybe I hold out some small hope that she will get it and own up to it - but then I doubt it. Right now it is a wound that I choose to, for the most part, try to leave alone - but it still really hurts.
I know I am rehashing - but sometimes I need to reexamine things at some point after the event to see how I acted to determine if there is something more to do at this time. I will say - and acknowledge that I should have addressed the issue when she was here - but I didn't have the strength, just recovering from surgery. I will confess that even afterwards I didn't handle the situation as I would have like - but that water under the bridge and in the past - and so you might add is this entire incident - so way revisit it - because it still hurts and it still has unresolved energy out there - at least for me.
Having shared here will now enable me to put this down again for a little while and let it be what it is. It is just a process as all other things are in life and I am trying to gently deal with it always trying to love and be kind to myself - even as I am very human and have faults and failings.
I have been thinking, over the last few days, about my friend that stayed with me. Please forgive me for rehashing this some, but I feel this article may give me some clue as to her behavior - though I had an inkling when I called and tried to talk to her and then her strong reaction to one of my poems. While the article gives me clue - it doesn't bring me closer to forgiving or healing. I really want to hear "I am sorry - I wasn't there in the way you needed and I am sorry that hurt you" - at least that is some acknowledgement that her actions effected me. This maybe small consolation but she does acknowledged she tried and her strong reaction to my poem indicates to me that she knows something was wrong whether she is willing to admit her part in this or not. In thinking back - it is almost as if she were angry at me for getting cancer and then trying to put all the blame back on me, bullying me to get my life back to normal so she didn't have to worry anymore. All I am trying to do is understand how the hurt happened and give her some allowance. While I can give her a little allowance it this was the coping mechanism in play but I just can't forgive that right now. The simple acknowledgement of what happened and I am sorry would have been enough to set things right. Better yet, it would have been better if she acknowledged that she couldn't do this at all - that it was too much for her to handle - at least I could have better arrangements - well we know what happened there. In reality I know that no acknowledgement or saying I am sorry is likely forthcoming and so I hurt and now mourn the change and possible end of a friendship. Honestly I am still ambivalent on that point - or maybe I hold out some small hope that she will get it and own up to it - but then I doubt it. Right now it is a wound that I choose to, for the most part, try to leave alone - but it still really hurts.
I know I am rehashing - but sometimes I need to reexamine things at some point after the event to see how I acted to determine if there is something more to do at this time. I will say - and acknowledge that I should have addressed the issue when she was here - but I didn't have the strength, just recovering from surgery. I will confess that even afterwards I didn't handle the situation as I would have like - but that water under the bridge and in the past - and so you might add is this entire incident - so way revisit it - because it still hurts and it still has unresolved energy out there - at least for me.
Having shared here will now enable me to put this down again for a little while and let it be what it is. It is just a process as all other things are in life and I am trying to gently deal with it always trying to love and be kind to myself - even as I am very human and have faults and failings.
morning mediation
I wanted to share this with you. This is a daily meditation I do for myself MOST mornings. It helps reenforce the positive thoughts and ideas. I print these out and scribble my answers. I have a stack of them saved at home. Maybe someday I will go back and just look at the progression of thought.
A mediation for each morning:
Call in the directions
Connect to the core of the earth
List what I am grateful for
List what lesson are being taught me
List what joy or awe I had yesterday
What will bring me happiness today
What do I celebrate in my life
What challenges me right now
What am I hopeful about
How do I walk with the Goddess
How do I claim my Goddess and masculine power
Draw my shield with the Goddess and pink
Believe that something good will come from this
Say “I am Blessed”
Count My blessings 10 positive things about me
Thank the directions
A mediation for each morning:
Call in the directions
Connect to the core of the earth
List what I am grateful for
List what lesson are being taught me
List what joy or awe I had yesterday
What will bring me happiness today
What do I celebrate in my life
What challenges me right now
What am I hopeful about
How do I walk with the Goddess
How do I claim my Goddess and masculine power
Draw my shield with the Goddess and pink
Believe that something good will come from this
Say “I am Blessed”
Count My blessings 10 positive things about me
Thank the directions
Tuesday, August 17, 2010
Coping With Crises Close to Someone Else’s Heart
http://www.nytimes.com/2010/08/17/health/views/17essa.html?pagewanted=1&_r=1
A good NY Times article about how others cope with crises
A good NY Times article about how others cope with crises
Friday, August 13, 2010
Harsh light of cancer
Let the light glare
Almost too intense to see it
But knowing tells me it is there
A simple thing
Harsh
sharp
Defining
The black hole with it's quazar
The dark shape back lit in bobbing flashlights
Seeking it
But inside me
My strength grows to encounter it
Counquer it
I stand tall
Shoulders back
Fists up
Ready to give it all I have to defeat it
Shine the light so it can not hide
On the word itself
On the cells gone heywire
Call it what ti is
CANCER
Take its power way by talking about it
Naming it for what it is
Do it again and again when needed
So that right now I do not fear it
All the subtilties
simply and honestly
Catch it like a criminal
Put in on a perp walk
Shame it/embarass it
take away its energy
clean expedient
Show no mercy to it
Only to the one who has it
Don't dance around it
Or avoid it
Face it head on
Almost too intense to see it
But knowing tells me it is there
A simple thing
Harsh
sharp
Defining
The black hole with it's quazar
The dark shape back lit in bobbing flashlights
Seeking it
But inside me
My strength grows to encounter it
Counquer it
I stand tall
Shoulders back
Fists up
Ready to give it all I have to defeat it
Shine the light so it can not hide
On the word itself
On the cells gone heywire
Call it what ti is
CANCER
Take its power way by talking about it
Naming it for what it is
Do it again and again when needed
So that right now I do not fear it
All the subtilties
simply and honestly
Catch it like a criminal
Put in on a perp walk
Shame it/embarass it
take away its energy
clean expedient
Show no mercy to it
Only to the one who has it
Don't dance around it
Or avoid it
Face it head on
1AM
I have a restlessness
maybe from the humid air
blown about by the fan
or
that some magic will happen if I close my eyes to sleep
Tonight I have cried
For love
More for gratitude
Talking to a dear friend
in the dark of night
Telling her how precious she is to me
I whisper these intimacies
Into the darkness
And while pouring my full heart out
of hope and disappointments
Wanting to fill her giggling pink sparkle light
That she so often shares with me
I hug my puffy feather pillow
with the big orange gerbera daisy on it
As if it were her
Holding on not wanting to break the spell
Of loving me just as I am and were I am at
I tell her we must go to the roof top bar
Her and I alone
And just chat
Fill the inbetween times of doctors appoointment
with something special
So I seek the night for some ordinary magic
that will easy this heart that is spilling over
With love's tears
maybe from the humid air
blown about by the fan
or
that some magic will happen if I close my eyes to sleep
Tonight I have cried
For love
More for gratitude
Talking to a dear friend
in the dark of night
Telling her how precious she is to me
I whisper these intimacies
Into the darkness
And while pouring my full heart out
of hope and disappointments
Wanting to fill her giggling pink sparkle light
That she so often shares with me
I hug my puffy feather pillow
with the big orange gerbera daisy on it
As if it were her
Holding on not wanting to break the spell
Of loving me just as I am and were I am at
I tell her we must go to the roof top bar
Her and I alone
And just chat
Fill the inbetween times of doctors appoointment
with something special
So I seek the night for some ordinary magic
that will easy this heart that is spilling over
With love's tears
Wednesday, August 11, 2010
Car pointed in the right direction - train back on the rails......
I figured I would send out a note on a good day - instead of just sharing my woes.
So I have started calling saying to myself "HI- I am Carolyn - NED" no evidence of disease! It makes me laugh and feel silly and this is good. It is also a positive mantra along with my "I am healthy, I am whole"
The last couple of days have been good - I have been fussing about normal things like needing to lose weight and it being too hot to exercise and I don't like that. The gym at Pratt is closed until next Monday. I really want to get back into the gym and focus on taking off more weight. Honestly I have been using the cancer as an excuse for not doing this - but that is going to change.
Okay - I am putting this out there. I am going to take a bellydancing class this weekend. Saturday morning - a great way to start my weekend. I will report back on how it went. And then I go to a Mets baseball game in the evening. I am excited. So that leaves Saturday afternoon for chores.
Lately - in the morning before I go to work I have been doing a devotional that I developed where I write down things like - what I am grateful for/what is challenging now/what will make me happy/what has struck me with awe/how do I walk with the goddess - and I list 10 good/postive things about me. It really helps get the day off to a good start.
I made a pair of earrings a couple of nights ago and I am slowly working my way around to creating my "blue" rope of beads. I put all the beads in a large heart-shaped tart dish so I can see all the beads, and I play with them waiting for them to "talk" to me and tell me where or who to start with.
Well that is my chatter for now.
Have a great day....
So I have started calling saying to myself "HI- I am Carolyn - NED" no evidence of disease! It makes me laugh and feel silly and this is good. It is also a positive mantra along with my "I am healthy, I am whole"
The last couple of days have been good - I have been fussing about normal things like needing to lose weight and it being too hot to exercise and I don't like that. The gym at Pratt is closed until next Monday. I really want to get back into the gym and focus on taking off more weight. Honestly I have been using the cancer as an excuse for not doing this - but that is going to change.
Okay - I am putting this out there. I am going to take a bellydancing class this weekend. Saturday morning - a great way to start my weekend. I will report back on how it went. And then I go to a Mets baseball game in the evening. I am excited. So that leaves Saturday afternoon for chores.
Lately - in the morning before I go to work I have been doing a devotional that I developed where I write down things like - what I am grateful for/what is challenging now/what will make me happy/what has struck me with awe/how do I walk with the goddess - and I list 10 good/postive things about me. It really helps get the day off to a good start.
I made a pair of earrings a couple of nights ago and I am slowly working my way around to creating my "blue" rope of beads. I put all the beads in a large heart-shaped tart dish so I can see all the beads, and I play with them waiting for them to "talk" to me and tell me where or who to start with.
Well that is my chatter for now.
Have a great day....
Monday, August 9, 2010
I am so sorry
Okay - I am not going to read the gist listserv - it has rattled me too much. So this is turning my car around (priscilla) or getting the train back on the rails. Reading the listserv overwhelmed me with information and had me questioning my treatment path. I can't do this to myself and to you. I am not one of these patient warriors - I believe in the doctors helping me and me helping them, but also asking questions - sometimes tough ones that need to be asked. I just can't fight with my doctors - I am not like that. So I am sorry to all of you for sliding in some direction other than forward to healing and health.
Priscilla also warned me about people who live for cancer. Well, I think I talk to such a woman last night. While she, in her way, is an advocate for researching GIST she also lives for her cancer. She was another one pushing gleevec treatment. I don't want to do my life to be about cancer. I want to move on and manage the cancer so it is as part of my life but not the reason for my life. Now, I know I am not there yet - I know I swing back and forth and am slowly progressing to what I want. It will take time for me to get there, but I am working on it and I am so grateful to friends and family who help me get back on the right track.
Priscilla also warned me about people who live for cancer. Well, I think I talk to such a woman last night. While she, in her way, is an advocate for researching GIST she also lives for her cancer. She was another one pushing gleevec treatment. I don't want to do my life to be about cancer. I want to move on and manage the cancer so it is as part of my life but not the reason for my life. Now, I know I am not there yet - I know I swing back and forth and am slowly progressing to what I want. It will take time for me to get there, but I am working on it and I am so grateful to friends and family who help me get back on the right track.
How do I ask....
For someone to be an advocate with me or for me? Right now it feels like this is the hardest struggle to carry alone. Do I ask you? I know Priscilla you have been there with the doctor and my dear sisters have been to test and everyone with your notes and phone calls - but what about the inbetween times that I seem to be in especially struggling right now. Must I always be the one to reach out? Can this void be filled? I still don't have this support thing to where it needs to be - but I am working on it....
Article from the Boston Herald
I just pass this one. I have heard a lot about this Pan Mass bike ride - mostly through that great radio program - Car Talk!
http://bostonherald.com/news/columnists/view/20100808cancer_brings_them_closer/
I cried some this morning. I just don't know that I have to courage that others who have lived with gist for many years have. They have other who can advocate for them when they can not - and I don't feel I have that. And that contributes to this feeling that I am going through this alone. I don't feel as if anyone really has my back and can step in when I can't and that is a very lonely feeling. It takes a lot to be my own advocate and sometimes I feel I can't do it - I just don't have the courage right now. I know I am may by putting the cart before the horse, but I am scared to take Gleevec. I know I don't have to make that descision right now but it is only I who will choose and and feel like it is only me who researches to find a good way for me - and doing that alone is hard and my courage fails me sometimes. I know this really takes a conversation with my doctors, but right now it feels like a monkey wrench has been thrown in after I was feeling so good. I feel good today and will talk about all of this in support group this week. Part of my just wishes I had an answer now.
http://bostonherald.com/news/columnists/view/20100808cancer_brings_them_closer/
I cried some this morning. I just don't know that I have to courage that others who have lived with gist for many years have. They have other who can advocate for them when they can not - and I don't feel I have that. And that contributes to this feeling that I am going through this alone. I don't feel as if anyone really has my back and can step in when I can't and that is a very lonely feeling. It takes a lot to be my own advocate and sometimes I feel I can't do it - I just don't have the courage right now. I know I am may by putting the cart before the horse, but I am scared to take Gleevec. I know I don't have to make that descision right now but it is only I who will choose and and feel like it is only me who researches to find a good way for me - and doing that alone is hard and my courage fails me sometimes. I know this really takes a conversation with my doctors, but right now it feels like a monkey wrench has been thrown in after I was feeling so good. I feel good today and will talk about all of this in support group this week. Part of my just wishes I had an answer now.
Sunday, August 8, 2010
Updates
Well - the gentleman from the listserv who upset me apologized. At least he isn't the unfeeling cad I thought him to be. I had my ammunition all lined up in case he didn't apologize and thank you letting me get it out of my system.
I have connected up with others on the list as well. I spoke with the women in Rockland Co. NY. Her, along with others on the list keep advocating taking Gleevec as a preventative to recurrance and having scan more frequently. This has upset me. I will talk to the surgeon and even go back to my oncologist to talk to him if I must. I am just not sure. My tumor was small and has a very low mitotic rate. I worry about fighting my doctors if taking Gleevec will help reduce the recurrance of the cancer in the future. But I don't know - because I am on the lucky side of this cancer right now - but what if....
I have connected up with others on the list as well. I spoke with the women in Rockland Co. NY. Her, along with others on the list keep advocating taking Gleevec as a preventative to recurrance and having scan more frequently. This has upset me. I will talk to the surgeon and even go back to my oncologist to talk to him if I must. I am just not sure. My tumor was small and has a very low mitotic rate. I worry about fighting my doctors if taking Gleevec will help reduce the recurrance of the cancer in the future. But I don't know - because I am on the lucky side of this cancer right now - but what if....
Saturday, August 7, 2010
Needing to vent
Okay so I am still really happy that I found this listserv for GIST and making some connections, but something has already happened. Some man in Hawii whom I will never meet basically writes to question my treatment plan. I am insenced! Pissed off! If I could I would rip him a new a-- hole. How disrespectful and hurtful. I just got to get this out of my system. I have already sent back a polite put pointed email - off list - pointing out to him that he is making assumptions about my treatment without knowing the rest of my story. Okay - he crossed a line - he made assupmtions about me without asking for my story first and in doing do indicated that my treatment was wrong. I wrote him back that not only am I seeing GIST specialists in both my oncologist and surgeon, but that I have also done my research about gleevac and my post-op follow up and that I was comfortable following the advice of my doctors and for him to please respect the choice my doctors and I have made. I also had to point out to him that there is more than one good hospital that treats cancer very well in NYC and that one hospital does not have to be Sloan Kettering. Not only did his assumption hurt but by making those assumptions that my treatment was wrong was an attempt to cast doubt on the care and treatment I have gotten. In my book no-one has the right to cast doubt about my choice of treatment - no matter what disease I am suffering from.
ok. now I am done.....back to being happy!
ok. now I am done.....back to being happy!
Friday, August 6, 2010
Happy Friday everyone
Yup! Carolyn is feeling fine! It is Friday, payday, and I am going out tonight with a girlfriend to a rooftop bar in NYC. I am excited. I actually got up this morning feeling happy! that hasn't happened in a LONG time.
The last couple of days have been pretty good. I posted on the GIST listserve and immediately someone from Rockland Co. NY contacted me off list. It feels empowering to finally learn a language that can help me deal with my kind of cancer and their are people who speak that language. It feel better and better to slowly give more a more articulate voice to my experience with cancer, to hear other's experience and have discussions about topics that are important to this type of cancer.
Another thing really helped me yesterday - I am giving a shout out to my dear friend Priscilla - many of you have met her. She is a true blessing in my life and the best of friends. Well she really helped me see that this is a disease that I will have to manage, probably for the rest of my life. With that realization sinking into my bones, and with a few tears shed, I know she is right. Cancer can not be my reason for living - in time it will become like my high blood pressure, something to be watched, monitored, managed and treated as it needs new treatment. I have been struggling lately to not have cancer become the center of my life. Now, for the last year that has been understandable that cancer has had that place, but now I am beginning to move away from that focus to a place where other things in life will be central, like work, working to give back and build connections and support for all that I do in life. It feels like now that I am making important connections with the cancer that it now doesn't need to be so central and having that support is allowing me to know turn to other things that make me happy and that I enjoy doing. I think this is generally helping my shift back to a more happy positive outlook on life.
Now, there will be times when the cancer will come back to the center stage - for scans and doctor visits - but that isn't all of life - there is some much more to it than cancer.
So to all of you - Have a happy Friday!
The last couple of days have been pretty good. I posted on the GIST listserve and immediately someone from Rockland Co. NY contacted me off list. It feels empowering to finally learn a language that can help me deal with my kind of cancer and their are people who speak that language. It feel better and better to slowly give more a more articulate voice to my experience with cancer, to hear other's experience and have discussions about topics that are important to this type of cancer.
Another thing really helped me yesterday - I am giving a shout out to my dear friend Priscilla - many of you have met her. She is a true blessing in my life and the best of friends. Well she really helped me see that this is a disease that I will have to manage, probably for the rest of my life. With that realization sinking into my bones, and with a few tears shed, I know she is right. Cancer can not be my reason for living - in time it will become like my high blood pressure, something to be watched, monitored, managed and treated as it needs new treatment. I have been struggling lately to not have cancer become the center of my life. Now, for the last year that has been understandable that cancer has had that place, but now I am beginning to move away from that focus to a place where other things in life will be central, like work, working to give back and build connections and support for all that I do in life. It feels like now that I am making important connections with the cancer that it now doesn't need to be so central and having that support is allowing me to know turn to other things that make me happy and that I enjoy doing. I think this is generally helping my shift back to a more happy positive outlook on life.
Now, there will be times when the cancer will come back to the center stage - for scans and doctor visits - but that isn't all of life - there is some much more to it than cancer.
So to all of you - Have a happy Friday!
Thursday, August 5, 2010
Connecting with a GIST network
Wow - I talked with a women this morning from Life Raft. I am now on a list serv for people diagnosis with GIST and there maybe a support group here in NYC. I will wait and see. It is a good place to ask questions and process information and talk about other stuff going on too. So this brings me to following up on yesterday's post and a question to add to the others to ask my doctor.
Should I take gleevac as a preventative for the recurrance of the GIST.
The woman I spoke with will send me some information about % of recurrance and taking gleevac.
I am both excited and overwhelmed - in a good way - to have others to talk to who have the same cancer I do. I also feel a relieved too. I am feeling strong, courageous and hopeful.
Should I take gleevac as a preventative for the recurrance of the GIST.
The woman I spoke with will send me some information about % of recurrance and taking gleevac.
I am both excited and overwhelmed - in a good way - to have others to talk to who have the same cancer I do. I also feel a relieved too. I am feeling strong, courageous and hopeful.
Wednesday, August 4, 2010
long term reality sinking in
Well - today I had a good day. It started out a little shaky being scared about the long term prognosis but a couple of girlfriend phone calls soon cheered me up and work kept along at a steady pace to keep my mind busy - so it was a good day!
I got myself signed up on a GIST listserv where I can share my story with others who have the same cancer I do. I think it will be a great help.
I have started writing down questions for the Dr. when I see him
What is the long term prognosis?
When will this be considered in remission?
What is the rate of recurrance? metastasis?
What do we do to monitor it?
How often?
Should I go back to seeing the oncologist?
If you can think of other questions I should ask - please let me know.
I have to find a more balanced way of living/dealing with this cancer. I am going to be living with it as part of my life for sometime to come, even if it is a check up every 6 months right now. I have to get on with living the rest of life with GIST as a part of it and not the primary focus. I am not so much frustrated or freaked out by this longer term prospect - it is really just a reality that is starting to settle into my thinking. I was thinking that once I had this scan at the end of the month I was hoping, or maybe deluding myself, that that would be that, it would be all over. Well maybe the hardest part will be over - but it isn't all over - it is sinking in that at least for now - this is going to part of my ordinary life. It needs, for me, to become just something else I do in my life - I go for my GIST check up. I want it to sound horribly mundane, because up to know it has taken over my life and I want to put it in my life but not running it.
I have started setting up after work get together's with friends prior to the scan - to keep me busy and engaged and to keep me from worrying too much. I know some of you here I have made plans withs - and others we will get it planned.
Well - goodnight for now and lets hope tomorrow is a good day. I should find out what kind of scan the Dr. wants and if we can do it on a particular date. It feels good to take the tiny steps to get this rolling and I feel positive.
I got myself signed up on a GIST listserv where I can share my story with others who have the same cancer I do. I think it will be a great help.
I have started writing down questions for the Dr. when I see him
What is the long term prognosis?
When will this be considered in remission?
What is the rate of recurrance? metastasis?
What do we do to monitor it?
How often?
Should I go back to seeing the oncologist?
If you can think of other questions I should ask - please let me know.
I have to find a more balanced way of living/dealing with this cancer. I am going to be living with it as part of my life for sometime to come, even if it is a check up every 6 months right now. I have to get on with living the rest of life with GIST as a part of it and not the primary focus. I am not so much frustrated or freaked out by this longer term prospect - it is really just a reality that is starting to settle into my thinking. I was thinking that once I had this scan at the end of the month I was hoping, or maybe deluding myself, that that would be that, it would be all over. Well maybe the hardest part will be over - but it isn't all over - it is sinking in that at least for now - this is going to part of my ordinary life. It needs, for me, to become just something else I do in my life - I go for my GIST check up. I want it to sound horribly mundane, because up to know it has taken over my life and I want to put it in my life but not running it.
I have started setting up after work get together's with friends prior to the scan - to keep me busy and engaged and to keep me from worrying too much. I know some of you here I have made plans withs - and others we will get it planned.
Well - goodnight for now and lets hope tomorrow is a good day. I should find out what kind of scan the Dr. wants and if we can do it on a particular date. It feels good to take the tiny steps to get this rolling and I feel positive.
the start of my bucket list
Boy this has a lot of traveling on it!!
My bucket list
Have a loving life companion
See:
Paris
Istanbul
Cairo
India
Take a road trip from Glacier to the Grand Canyon
See the Northern Lights
See the Callanish Stones
Visit the Orkney Islands
Stay at Duntrunne Castle
Figure out a way to give back – help others
Red Tent
Connecting unconventional women
Paint
Photograph lovely things
Go back to New Mexico
Visit Pemaquid Point again
Skinny dip under the stars
Have support as I get older
Have lots of friends
Hang out with family
Take a cruise of the Caribbean
See Venice/Florence and Rome
Read good books
eat healthy
lose weight
have a garden
see the tulips in the Netherlands
to keep writing
expand my spirituality
Keep finding my bold Queen voice
to discover new ways to walk with the Goddess
belly dance
Laugh more
spend time with my family
My bucket list
Have a loving life companion
See:
Paris
Istanbul
Cairo
India
Take a road trip from Glacier to the Grand Canyon
See the Northern Lights
See the Callanish Stones
Visit the Orkney Islands
Stay at Duntrunne Castle
Figure out a way to give back – help others
Red Tent
Connecting unconventional women
Paint
Photograph lovely things
Go back to New Mexico
Visit Pemaquid Point again
Skinny dip under the stars
Have support as I get older
Have lots of friends
Hang out with family
Take a cruise of the Caribbean
See Venice/Florence and Rome
Read good books
eat healthy
lose weight
have a garden
see the tulips in the Netherlands
to keep writing
expand my spirituality
Keep finding my bold Queen voice
to discover new ways to walk with the Goddess
belly dance
Laugh more
spend time with my family
Tuesday, August 3, 2010
a website that deals with GIST
Friends,
Here is a website that deals with GIST - for your information
http://www.liferaftgroup.org/index.html
From their website:
Prior to 2001, surgery was the only successful treatment option for GIST. However, even for patients whose tumors are completely removed and have microscopically clean margins, there is a high probability of local tumor recurrence in the abdomen. Reports of median time to recurrence vary widely (from 7 months to 2 years)1 and a large retrospective study reported a median time to recurrence of 19 months.2 However, documented GIST recurrence over 20 years after primary surgery underscores the need for long-term follow-up of patients after apparently successful tumor resection.
Right now this is depressing me. It is something to ask the surgeon or the oncologist - if I go back to him. I am struggling with how to live my life between all those follow up tests. I know I sound dramatic and I am not there yet and this isn't the here and now - but right now my courage is failing me.
Now the fight in me says - work on my bucket list - first I have to write one up - that should be fun!
Here is a website that deals with GIST - for your information
http://www.liferaftgroup.org/index.html
From their website:
Prior to 2001, surgery was the only successful treatment option for GIST. However, even for patients whose tumors are completely removed and have microscopically clean margins, there is a high probability of local tumor recurrence in the abdomen. Reports of median time to recurrence vary widely (from 7 months to 2 years)1 and a large retrospective study reported a median time to recurrence of 19 months.2 However, documented GIST recurrence over 20 years after primary surgery underscores the need for long-term follow-up of patients after apparently successful tumor resection.
Right now this is depressing me. It is something to ask the surgeon or the oncologist - if I go back to him. I am struggling with how to live my life between all those follow up tests. I know I sound dramatic and I am not there yet and this isn't the here and now - but right now my courage is failing me.
Now the fight in me says - work on my bucket list - first I have to write one up - that should be fun!
dealing with the fear again
Courage is simply the willingness to be afraid and act anyway.” Dr. Robert Anthony
“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” Lao Tzu
I found these two quotes about courage. I am finding I need lots of courage again. I think the someone I love is myself to give myself courage - I am not sure if anyone around me is showing courage because of their love for me. Just starting to make that first follow up appointment, CT scan etc. has me a little upset. It really came out at a Lamas celebration last night. My friend held me for a good long time, but all I wanted to do was crumple up on the ground, right there in Central Park and just cry and wail until it was all out - I really wish I could do that just once - just cry until it stopped and I didn't have to stop for move on/get on a train/go back out in the world. Such fear and crying really take the crap out of me, so I have spent today getting my feet back under me. I really have been working to try to let go and express it in all sorts of ways - but tears seem to me so important - and yet right now - they don't easily flow. I have to be in a safe place with people i can trust for it to happen.
Someone said the b word to me last night - brave. I really bristle at this word. I am not being brave - I don't feel brave - I am doing what I have to do to survive, to stay alive - to me there is nothing brave about it. Please don't say the brave word to me - any other supportive word, but not brave.
“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” Lao Tzu
I found these two quotes about courage. I am finding I need lots of courage again. I think the someone I love is myself to give myself courage - I am not sure if anyone around me is showing courage because of their love for me. Just starting to make that first follow up appointment, CT scan etc. has me a little upset. It really came out at a Lamas celebration last night. My friend held me for a good long time, but all I wanted to do was crumple up on the ground, right there in Central Park and just cry and wail until it was all out - I really wish I could do that just once - just cry until it stopped and I didn't have to stop for move on/get on a train/go back out in the world. Such fear and crying really take the crap out of me, so I have spent today getting my feet back under me. I really have been working to try to let go and express it in all sorts of ways - but tears seem to me so important - and yet right now - they don't easily flow. I have to be in a safe place with people i can trust for it to happen.
Someone said the b word to me last night - brave. I really bristle at this word. I am not being brave - I don't feel brave - I am doing what I have to do to survive, to stay alive - to me there is nothing brave about it. Please don't say the brave word to me - any other supportive word, but not brave.
Monday, August 2, 2010
Happy Lammas - celebration of first harvest
This is a more chatty entry - because I feel chatty.
Things are going pretty well right now. I am in a support group at Gilda's Club. I had a great weekend with one of my brothers in Rye NY. Good food, good wine, good company. I had a boat ride on the LI Sound which was pretty amazing.
Tonight I am headed out to celebrate Lammas - the celtic ancient festival of first harvest in Central Park - lets hope any thunder storms stay away tonight.
Blessings to you all.....
Things are going pretty well right now. I am in a support group at Gilda's Club. I had a great weekend with one of my brothers in Rye NY. Good food, good wine, good company. I had a boat ride on the LI Sound which was pretty amazing.
Tonight I am headed out to celebrate Lammas - the celtic ancient festival of first harvest in Central Park - lets hope any thunder storms stay away tonight.
Blessings to you all.....
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