Talking about Cancer in a new way

I want to say cancer
A thousand times
A million times
Until I am sick of hearing myself say it
I want to take the bite out of is
That thinest edge of fear
That may never go away
And yet cancer right now feels like something so different
I feel enboldened by it
Cancer has given me something
Something good that has been working
in me for sometime now.
Renewed hope and faith
In all kinds of wierd and wonderful ways
In the beginning I said "cancer is a blessing" as some hope to hold onto
Because the only faith I had was to put one foot in front of the other
That I would somehow get through this
Having no clue how
So I found myself returning to my roots
my spiritual roots
And with the help of friends
Finding good ways to nourish my roots
Working hard
Through meditation and commitment to find me
And love me again
And now I find that those roots are stronger
And my tree of life stronger for the roots I have sent down deep in the earth
So that Cancer has become a strength in me
I want to talk about cancer in a new way
for the courage it now gives me to do new things
To dare to become the person I see for me
Now you will say "Cancer hasn't done this......but rather your experience with cancer"
And I would say "semantics!"
Having Cancer has been the catalyst
In coming through
Right now I am happier then I have been in a long time
I am slowly building something new for myself
A way I want to be in my community
With my friends
I have the feeling that life is again opening like a flower before me
The petals being the supportive lessons I have learned
And all the love I received from friends
I want to tell you that cancer has helped me
To hug longer
Do touch base calls to friends
I want to share the joy in heart
including the deep tears of gratitude
When the voice can't speak
I try to speak up more so my voice is heard
I am focused on making me happy
And in small ways helping others
My life flows out of sacred space a claim every day
The space of quieting the mind and listening to my breath
I want to be with people more and to break my isolation
It seems the more joy I feel the more Joy I find
While life is back to some kind of normal
It looks fresh and uncluttered
There are hurdles to come
And anniversaries to get through
And maybe the twinge of fear keeps me honest
Or going
Reminding always to stay focused on what is important
And to let the other things go

Christmas Carol

I am watching the Alistar Sims version of "A Christmas Carol" and I really get the scene first thing Christmas morning. I was watching a muscial version with Albert Finney, "Scrooge" and the jubilant feeling on Christmas I know so well, the liberation from the darkness to a new life. Now "A Christmas Carol" will have an even sweet place in my holidays.

Yule spirit and moving closer to forgiveness

Wow! Christmas is this week. I finally have the spirit. I have been revelling in winter, but now that I have my all my xmas lights up, and I made two batches of my mothers stole with Carolyn twists. I have my presents ready. So now I can relax and just enjoy things.

I had been fussing about my friend until I talked to my therapist friend and these two poems came out. Maybe I am moving closer to forgiving by stopping blaming myself and accepting that things happened the way they happened.

I hope you all have a wonderful holiday and soak in the quiet winter.


I want to bury this hurt
In winter’s hard ground
I want not to care or love you
I want to pluck out the thorn and be done with it
I want to shake you
To make you listen
To honor what I say
To respect me
Don’t make me feel like I am to blame
Or that you are superior to me in some way
Instead I am left with hurt silence
Since you aren’t willing to listen to me
Or respect me
So maybe we are better off parted


She said it
She wasn’t the right person for the job
As simple as that
And suddenly my anger and hurt
Had no fire
So maybe I stopped
Blaming myself
For making the wrong choice
Or blaming her for not stepping up
I don’t know
But for now
That thorn in my soul doesn’t hurt so much now
Instead there is this deeper quiet
Stepping closer to forgiveness

My horoscope from yesteray

This was my Daily OM horoscope for yesterday - it really does express what I talked about yesterday - I just thought I would share

December 13, 2010
Anxious Over-Thinking
Taurus Daily Horoscope
Today you may find yourself over-thinking your plans, trying to figure out exactly how to make them successful. By making yourself anxious, you may actually be hindering your own progress. Instead of trying to know every step, allow room for the universe to move. When we try to force things into existence, we end up exerting a lot of energy and may discover the square peg and the round hole don't fit together as nicely as we'd hoped. But when we can accept the spaces where unknowns exist and turn within to our source, we will find that solutions present themselves. This shift in attitude turns anxiety into the joyful suspense experienced by someone who knows that they have gifts to open, but not exactly what they might be. Today rather than investing your energy into worry, you can experience the thrill of positive expectations.

When we focus on worry, we direct our energy and that of the universe into the creation of our anxieties. Since money is just another representation of our energy, we can imagine that worry is like choosing to take money out of a money-making venture to throw it into the paper shredder instead. Using the same analogy, when we accept the limitations of what we know and trust the universe to fill in the blanks, we allow space in storage to accommodate the influx of money we expect to arrive. Today by shifting your focus from worry to pondering the infinite possibilities, you make planning for success an enjoyable game that can't be lost.

Further thoughts

Well, I got through today in a good way. I am beginning to be aware of the thoughts patterns that accompany the freaking out - and being able to see/listen to them, address them, then to stop thinking those things and change, slowly, the thought pattern.

Now I know these thought patterns are silly, but after all, they are my thoughts patterns - so bare with me.....
First my brain starts thinking about all the pain and discomfort of my past expereinces from kidney stone.......
Another thread thinks - oh here we go again - this is how it started last time......
I would be lying to if the above thought didn't have the added "and then came the cancer"
Another thread - heavens I am going to have to lithotripsy again

okay so after these are running around in my head on that endless carousel of thoughts I first make myself stop by focusing myself to focus on my breathing. I say to myself - breathe in - breathe out and I do it until I calm down. Also taking a walk works - this morning they kicked us off the G train one stop shy of where I get off and instead of waiting for what were to be very crowded buses, I walked the rest of the way to work.

Then - I ask myself - are any of those thoughts represent what is going on at this very moment? NO! I am not in pain - and I can't control this - so focus on what I can control - an maybe that is a little bit where faith comes in for me. In letting go of what I can't control and not worrying about. All I can do are to take actions that will begin to get answers - like making the appointment with the urologist - which I did today. I learned somewhere in my journey to focus on all the bad things that COULD go wrong instead of looking squarely at the present to see if the present looked like the future - which it almost never does.
All of this also gets me around to thinking about faith - as I have heard famously quotedd - believing in something when logic tells you not to.
Heavens it feels like I have opened a can of worms.
I don't think that phrase captures faith for me. Faith is letting go control when I can control it - it is giving the Universe permission to help me out with those things I can't influence by my actions - faith is giving space to let go - to quiet the mind and shut off the brain - For me it is letting the unseen - unknown currents that swirl around me to move as they will - in a sense I can't stop it - rather I would flow with those currents and let me actions nudge me forward and to let go of trying to control.....

Well, that is at least part of an answer. Thanks for listening.......

Going to see the urologist

Right now I am succeeding at not freaking out. Over the weekend blood showed up in my urine. Today I am going to call the urologist who treated me last year. They did mention in my last CT scan for the GIST that there were a couple of small stones. I half took that information in - well now I need to deal with it. My mantra today is to take it one step at a time and not focus on it - rather to keep my breath deep and steady and do and think other things. Honestly though I am just scared. I try to have faith but that is hard for me - but I keep trying. Faith is something I have been giving a lot of thought and I hope will talk about more here.

Well, time to get on with the day.

Freaking myself out

Okay - I confess - I am making a mountain out of a hill - classic me! and a hill because cancer is no mole hill. I got a bee in my bonnet about GIST cells wandering around my body ready to attach themselves anywhere at anytime. I was getting really upset about this - the whole random element of it - well and the feeds into the whole randomness of this cancer! What also freaked me out was I wasn't sure who to talk to --- well, I finally looked at the LifeRaft Group website and refreshed my memory about certain things and now I am feeling much better. I think I will feel even better when I get home and just double check my tumor's pathology report. You would think I would have such numbers memorized by now, but I don't. I only look at them if I have to. I am going to double check my tumors size. Okay I go the scary under control - until something else scares me......

I hope everyone had a good Thanksgiving. Now it is back to Weight Watcher for me.....

Thanksgiving

Good morning everyone - and Happy Thanksgiving. I hope all of you have wonderful day planned for tomorrow.

I find myself this morning feeling very emotional. I might have said panic but there I am not having the symptoms of panic - so just very emotional. I am surprised by this. Some things are getting easier with where I am at with cancer, and some things seem to be getting harder. I know holidays loaded emotionally for lots of people, I am no exception, but this year there seems to be more things going on for me. This year I am more keenly aware, and so deeply grateful, for everyone who helped me through last year, in both small in big way. I am also more aware of life and how precious it is.

Along with these wonderful things is a slowly dawning realization that even though I may have gotten tumor in surgery, that GIST cells are wandering around my body and that I will need to be scanned for the rest of my life. That doesn't sound so bad - no it isn't - other then the fear that goes with each scan - but it does subtly point to the fact that this is never really gone - it will always be in the back of my mind. I guess I am having a hard time with that - and so my emotion. As I have heard from many getting cancer is an innocence lost, and maybe I am still mourning something taken away from me. Part of me still wants to rebel against this death of something - death of some innocence - part of also still wants run and hide and curl up and cry and come out when it is all over. And as I write this, I think of Elizabeth Kubler Ross' stages of death, though I am not sure if I am describing any one of her stages.

I think it is the holidays the brings the more difficult feelings into sharper focus. There have been times recently when life has been really rather normal and in someways I am moving on to what ever is next in life. But then something snaps me back, like a stretch rubber band that is suddenly let go and smacks on the hand. Ouch! it hurts. For me this week is was research old emails and find some that mentioned my surgery - and like a hot sharp knife the fear just ripped though me. And now Thanksgiving - I am finding hard to keep calm when my insides feel like they are in turmoil.

Now I get the feeling that I am complaining or that I should be upset because I am going to have to manage this for the rest of my life in some way. Maybe I can hear someone say "Yeah, so? - what is the big deal?" Okay, so this is the devil's advocates side of my personality....

So to end this on a more positive note. I endeavor, over this holiday, to remind myself to be kind and gentle to myself, to be deeply grateful for all I have and to celebrate that, to focus on my breath so I don't hold it in, and enjoy my family and soak in the love they give me.

things changing

Well, I have stopped going to my weekly support group at Gilda's Club. It is time. The last few weeks other things have take precedent including at work moving into a new building this week. I am grateful for the support they gave me so I could begin to talk about my cancer. But I do have one complaint, I had the feeling that because I didn't go through chemo or radiation, or that I was going to die from cancer, that my cancer experience was some how less than the others attending. My experience with cancer is just a scary as any one elses. So I am now looking for post treatment support. Gilda's Club does have a monthly meeting and I have found some on-line resources. Livestrong.org is one resource - it is the foundation that Lance Armstrong started. I was surprised at the depth of information and connection they have. I am feeling good and really dealing with just every day life now.

I did want to add - I do feel a little trepidation about moving on - letting go of support, even if it isn't working for me. It is stepping away from those with whom you have a common language and experience. While I still have all of you as wonderful supportive friends, there is a little sorrow in me in saying good bye. It is simply mourning a change.

getting upset

I will be the first to admit that it is late and I am tired but something set me off a little tonight. As much as I try to move forward with life cancer is still there. It is never far from my thoughts. I now read anything that comes to me about cancer. Today I read an article about Lance Armstrong and Livestrong. It isn't as scarry as it was but can still be upsetting. I don't think about it all the time, but I still think about it a lot. It feels like I am in a kind of no-man's-land of not in active treatment but not declared completely cured. This situation for me carries a lot of under lying uncertainty and doubt. That doubt is usually in the form possible recurrance and waiting. Tonight I just couldn't chase it away.

Autumn and loosing weight

I just got back from a walk. It is crisp and a little windy outside, a perfect autumn afternoon. Some of the trees on the Pratt campus are starting to change and there are a few roses blooming in the rose garden. As I walked around the garden I wished I had my camera to take pictures of all the pretty flowers.

Well, talking about autumn in NY isn't really why I am writing today. My real reason is to say - I have signed up with Weight Watchers. I got fed up last night, especially with my high blood pressure, and I just did it. I figured, I need a food/eating coach and they have a pretty good reputation. I can't take any of the first line drugs for my blood pressure, so the weight has to come off. Time to be a grown up - stop whining about it (at least to myself) - and making excuses - and get on with it. Yes, I have had some success over the last few years taking off about 40 pounds, but more has to change and they can support me while I do it.

You might say "this is related to cancer how?" well it is a no-brainer at least for me. I want to live a good while longer and to do that I have to take off the weight and get the blood pressure under control. Well, what did I learn from cancer - GET HELP! I have to shed this "i-can-do-it -on-my-own" attitude and just do it. Well, I still have to do the work and make the choices, but now I have a coach and a place to go for support. It is related to cancer in another way by wanting to take better care of myself all around. I fell into some "comforting" patterns, salty snacks, sweets (always my downfall), that though they may not be the best for me, helped me through a tough time. While I only gained about 10 pounds through the cancer, which considering what was going on, wasn't too bad. I have been able to take off that 10 pounds, but there are patterns that still have to change and I might as well get help doing it.

I am thinking about my goal weight. My ideal weight would be between 125-150. I have alway thought of a good target for me to aim for, at least for now is 200. That means I have 76 pounds to go, at least from when I last weight myself.

So, there is nothing like paying for something that makes it a good motivator. By paying for it I am making the commitment to myself to show up for myself and feel better for myself and to get help doing it. I am making the financial committment to achieve this goal. Also by telling all of you that I am doing it, and going to a weekly meeting, is also another motivator to not only reach my goal, but to keep me honest while I get there.

Quick update

Well, I had a good weekend. All my crying and fussing? for what? I got past this threshold just fine. Saturday I had a wonderful dinner with wonderful friends that made me feel all pink inside! Sunday I slept and rested to get ready for a big week at work. I did my laundry, food shopping and picked things up at the pharmacy, the only other thing I did was watch Monty Phython, Jeeves and Wooster and a Thin Man movie. Not a bad weekend and good for putting things in the positive.

Ciao for now.

Pictures of Montana

I know I am a little behind things here and most of you got pictures via email. But I want to put some up here for others to see if they find their way here.
Here are some of the things I did:

Met wonderful women like Nancy and Sandy

Big puffy clouds

Climbing a butte

Cancer as a gift

Not having to explain anything or bring others up to speed

Hand holding and hugs everywhere when it got too much

Wonderwoman to underwoman

Belly button connections

Power Hours

Big Full Moon

Hot Tub to ease aching muscles from climbing or horse back riding

Chakra meditation

Line danceing

Sing along at the fireplace with s'mores and Peter Paul & Mary

Making scarves and beaded necklaces

A warm fuzzy bag filled with all kinds of love and kindness from other women

Witchy/Pippy hair bands

Naps

Massage by Barb

Great Food

Wine Tasting

Laughing at myself!!!

One year anniversary

Well, it has been a year since being diagnosised with GIST. The last couple of days I was getting a little upset with this date looming. I was upset remembering the day my world changed with one word - TUMOR. Remembering the shock and fear all setting in at once. I had a talk with my therapist last night which helped a lot. Today is going wonderfully. My one goal for this day was to make it positive instead of it being spent fretting and crying.

I am pleased to report that is what is happening. I bought myself pink roses, a piece of birthday cake and other special food for today. I have done some on-line shopping for things I need like vacuum filters and I got concert tickets for the Indigo Girls for me and my niece Emily. I am going to take a luxurious bath and I am going out to dinner with a couple of friends tonight. We are going to a couple of little rituals - on the fly - one releasing all the fear/anger/worry/disappointment of the past year and the other affirming my strength and hope for the future. Otherwise I am doing fun things I want to do today.

I will be honest with you - there is a small hole or pit in my stomach, but I note it is there but don't give it another thought. I see this day as another threshold to move accross and beyond cancer with faith, hope, happiness and fierce courage. The first threshold was the first CT scan - and another big one will be the next CT scan which will mark some many things, one year of having the cancer removed and another clean CT scan.

The only thing I have to do is change the litter box! I am looking forward to the rest of this day with fun, happiness and hope - and that is the best kind of day.

It feels so good to be positive, happy and hopeful.

Back from Montana

I think I am still in a vacation glow. It hasn't worn off yet! I got back home about 12:30 Monday morning. Montana was amazing! Gold Creek is in the foothills of the Rockies, so no big mountains, but still a big landscape. I did all kinds of fun things and made great friends. Pictures and stories to come. Here is just a teaser: hiking up a butte, hot tub, line dancing, horseback riding, watching the sunrise. I spent Monday and Tuesday sleeping, unpacking and spending time with Soma and watching movies. I didn't want my Montana bubble to burst, but alas, work calls.

I always have this post vacation/pre work anxiety about going back to work. The chatter ranges from "I've lost my job" and "what I am going to walk into" as in crisis or "I want to go back to Montana" or other wonderful place I have been. I also have this feeling of "okay, what next?" and as such feel a little lost inside, with cancer now moving to a back burner in my life. My mind has yet to let go that unwarranted anxiety - things where fine when I got to work and my co-workers genuinely glad to see me and it feels good to be back to this routine.

I can't wait to share more pictures and stories with you.

Sooo excited!

OMGoddess! I am so excited. So much so I sent out the blog without writing anything in it.

So, let's start today with butterflies and airplanes. I saw a King Billy/Monarch butterfly on my way to work today - and then moments later an airplane. Butterflies have become a symbol for me because of the ability to change from catepillar to butterfly - I feel like cancer was my chrysalis of change. Now airplanes. I said to myself "I am going to be on one of those come early Thursday morning!"

I am just getting so excited I can barely focus my attention. In an odd way, thank goddess for work which forces me to focus on more mundane things and keeps me from getting so excited where I give myself a headache.

Last night I started planning what I am going to bring on my trip and creating a to-do list for pre-packing. I am taking off tomorrow to pack and pamper myself and hangout and talke with girlfriends all day. I have a session with my life coach, my therapist and later afternoon coffee with a friend. Doing those things will I hope keep me some how grounded so I don't get too excited.

I am not expecting to sleep too much tomorrow night - I usually can't sleep before a big trip I am just too excited. I will get a cab to the airport around 5:30 or 6. My flight leaves at 7. I think tomorrow night, to try to relax, I will watch movies, take a leasurly bath and again try to relax.

I will give a full report - with pictures when I get back.

celebrations

Good morning all -
I am in a good mood for a Tuesday! I think it was the good night's sleep I got last night. In bed early (for me) and slept until 6:30!

Well, I did a little celebrating over the weekend. First I went wave dancing with Beth. Wave dance or movement was developed by Gabriella Roth as a form of meditation. There are five movements flowing, staccato, chaos, lyrical, and stillness. It was amazing and it is serendipidous that Beth and I did this. Beth was the person I had lunch with after I first heard I had a GIST tumor. And Friday she was there as I took the final step across the threshold of being well again. I think the dance was that threshold. The chaos movement got me to crying and Beth was there to hold and hug me until it was all out and we swayed together in this connection as part of the dance. I was blessed and honored that Beth was there not only to hold and comfort me but to support me as I moved forward. My body didn't ache too badly on the way home or the next day. My key clue is if my feet really hurt - and they didn't - but it was most definitely both a great work out and a wonderful meditation.

Saturday I share a bottle of champagne with George and Priscilla. We had Thai take out and talked for hours - probably could have talk until the wee hours of the morning. I was wanted to celebrate with them because Priscilla you saw the most of anyone - you amaze me. You calmed me down when I was frantic with fear - you let me cry on your shoulder - hold your hand when I felt like a deer in headlights - you took me where I was at most of the time and was willing to just be with me - from these all three of us have become deeper friends - and that is what I am most grateful for.

In fact I think I think I have become closer to all of you who have listened to me here. I feel that is a blessing and I am so gratful for this great and wonderful connection.

a celebration in words

All at once
I want to fly cry shout sing dance
let the drums in the subway announce my joy to all
but I am the only one who knows
I want to fly like fireworks with sparkle as my tail
And burst into a thousand colored glittering lights
Lighting the dark of the night
hearing the echoes of oooo’s and aw’s
I want to dance
Let my body move with excitement
While tears of relief roll down my cheeks
Let Melissa sing to me
How they cut into my skin, they cut into my body,
but they will never get a piece of my soul
Here is my battle cry for hope now and always
Lady Stardust
Spread your hair across the universe and magic let us in
Lets fly into the Milky Way
Let play this song on and on until the dawn and never let them win
I try to say things that matter
To all those faces
Who I cry to now for all you have done to lift me up and comfort me
Here I celebrate in words
I wish I could bundle you up in a big hug and laugh and giggle forever
I want to roll down a grassy hill and laugh
Jump around silly
Shake all of me
Till there is nothing left in me but happy light
I want to go to the tallest hill
In the bright morning light and shout
I am cancer free
I want the world the hear – even the universe
Let me carry lesson forward
Of reaching out and speaking up
Be honest and true
Cry when you need to cry and let it all out
And after all this
Let us celebrate
Let me just smile and glow
You know why

I just had to set the record straight - my last entry was just for to calm and sadate.

I want to cry, shout, dance, laugh, sing, jump up and down, be the Macy's July 4 fireworks, I want to roll around in the grass and------this is turning into a poem ---more later

Quick update

It is offical - I just got off the phone with Dr. Picon! - I am NED! I want to celebrate again! and again! I am so happy! I will see him again in 6 months.

Wow - it has been a little while since I chatted away here.

Life has been pretty boring lately - which I welcome! I don't have something going on every evening during the week. It is nice to just go home and relax with Soma and watch TV or a movie. A nice change in pace.

My support group is now shifting to every week. We had a good meeting last night with new people coming in. It is a great place to talk about our experiences with cancer and other things going on in life. I may graduate in a little while since things have turned around significantly and I feel really good.

What other things have going on? Well, I got my blue bead rope done - and have to restring it - I don't like part of it so I need to adjust it. I also go a pair of earrings made with purple/blue/pink - my three favorite colors! I have another jewelry set to in the wings and a couple of thank yous to create - so all this "free" time I should get to it - I will, I will..... I may go bead hunting this weekend.

Over all I feel very positive. I do my little meditations in the morning. I hope to connect with a woman who practices celtic spirituality. This is one of the things that I found I needed to seek out as I recovered from cancer - to find someone or a group of someones to study and practice with. I haven't ever been in a coven or practiced with others and I found that I needed to share this part of me with others and to learn from them as well. I sought out the coven and I will see how that goes, but now there is also a women who in interested in connecting with someone and a mutual friend has introduced us. So again - I go along and see what happens.

I am slowly planting my Red Temple seeds and nuturing them. Trying to connect with other women is what I am trying to do now and is a little frustrating, but I am not giving up.

I am looking forward to fall in many ways.....but now I have to get back to work....

The word ordinary

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.

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.....

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.

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.

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

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

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.....

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.

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.

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"

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.

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

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

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

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

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....

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.

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.

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....

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!

PS - to Happy Friday

With all the support it feels like I am being set free.

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!

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.

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.

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

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!

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.

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.....

Being Heard

I have been giving this a lot of thought this morning. My mind has been swirling around in all kinds of directions.

My thoughts started out this morning in that angry disappointed place - that for so many years it feels like I haven't been heard. Then I started thinking about how I always had a sense that my parents didn't listen to me, some my brothers and sisters didn't listen to me or want to hear from me, my boyfriends didn't listen to me, even good friends didn't listen to me, sometimes the doctors didn't hear me especially when I needed to be heard. No wonder I have issues about being heard and trusting that I will be heard. I have remained silent all these years because I didn't think anyone would listen. I held back what I wanted to say because I didn't think I would be truely heard. Then I started thinking about how women culturally aren't listened to. Our word still doesn't carry as much weight as a man's in this and many society's. I think women have remained silent all these years and we pay a deep psychological cost to our own psyches, though in the last 75 years we have have become more vocal and more outspoken, more courageous in breaking the glass ceiling, but it isn't broken yet. This I painfully slowly learned after college as I began to question my society, but most especially the structure of the church and it was really hit home during grad school - and I became even angrier especially about misogony. It is still at work in our society. And then a very painful memory, 30+ years old reared its ugly head and I found I had to face it again and perhaps deal with the part of it's secret and to finally take it's power to hurt me away, as it has over the last 30+ year.

So it build's - not being heard and listened to over time can lead to a lot of anger and depression. This is a pattern I am trying to break. I feel like recently I have been heard in a special way and so the depression lifts. My sister has an empathic understanding of the stuggle I am going through and so does my therapist about being a single white women. Sometimes it is all I need - to know I have been heard for what I say.

And this is also a reason that I am seeking out others to make a retreat, in NYC, for women where they can be quiet, listen to themselves and then to be listened to when they speak. I think the Red Tent Temple Movement might be a way of creating that place. As Nell Morton said we "Listen others into being" and I think if we are honest with ourselves, we listen ourselves into being too - by listening to that deep quiet voice in each of us that urges us to be our true selves. I am trying to have the courage to really listen to myself and to others.

feeling like a burden has been lifted

Not only do I feel listened to, via my therapist, but also heard. She voiced back to me understanding of what I have been struggling with and that indicated she heard me and understood. What a relief it feels to be finally heard! That I am not a crazy single white woman in her late 40's. I really feel elated.

On a similar note I had a wonderful conversation with one of my co-workers, someone who I am not afraid to talk about my cancer. He was amazingly sympathetic and understanding all that cancer has brought my way. We had a discussion about how people of my age and younger are not as connected in community as those older than us, particularly communities that really take seriously the responsibility to care for one another. By not being connected to community makes it harder for single people to have the caring they might need, leaving us with this feeling of disconnect and unconscious yearning to find it. Just another confirmation that what I have been feeling and also trying to address for me is true and that I am not crazy with this persistant feeling. I put this feeling I had to more intimate relationships and the social structure around those relationships. I see now that this is not the only way the struggles of being alone come not only from that social structure but from the broader break down in communities as well. Nice to have a perspective broadened.

You might wonder how this relates to cancer - well - I have said all along I feel that I have gone through much of this process on my own. I have struggled to find safe places to talk about my cancer, to break the isolation of the experience and to overcome my fears. I feared not having support to get through this - I fear/ed not being loved and cared for. While I got lots of love and care from all of you I can't help but wonder if it might have been easier if I had more love and support. I am not saying that in a angry disappointed way, but rather just as a question to ponder. I know you did all that you could and that I am deeply appreciative of that effort. But I also imagined that I would have much more support around me, more care, more love if I had more people who cared. I am not be reproachful of myself either - I have already beaten myself about this. But I just say that when I view my mind's eye vision - there are more people there loving, caring supporting then what in reality happened.

So good to feel much lighter - to have the ideas out of my head and now others are talking to me about it too.

On being angry and single

Let the flames of my anger burn
I have a scorched earth policy
And am in no mood for the finer points of argument
For I feel I have been finally heard by someone
Voiced back to me what I have been struggling with
Being single and alone
Can no one hear?
Or Really listen?
Are my points too subtle?
Or long forgotten in your own experience?
That as a single women
I have a lesser status
No one will admit it
We are not a society of equals
That such subtle social structures are still at play
Even to be divorce
Or to have a boyfriend
Means you have been up in the accepted social structure
More than one who is unmarried
No one worries because I don’t have the status
I am a woman with no family
Of husband or children
I wonder if I am an after thought to the family of my parents created
Rather like being left behind or not thought of
Not that they would bother to tell me
If they thought of me at all
Take time from their families to reach out to me
They have busy lives with their own families
And I have none
No family of my own
To the point where the struggles of being alone
Seem to fall on deaf ears
To the blindness of not having the experience
It isn’t that I control much of my time or that I can do as I please
Those are the positive sides of being alone
But being alone
Might have held me back from going after dreams
Because I didn’t have support
Support and encouragement from my family
Or that I settled for lesser jobs just so I could stay afloat
I have not thrived or reached any of my potential
Was that all my fault?
Or was there some hidden forces holding me back
Or not giving my support even when I asked for it
As I tried to do better for myself - alone.
You might quibble that things are okay
My complaints are what everyone complains about
We all struggle with life
And for this I shouldn’t be angry
With myself for never quite figuring out
How to put it all together to make it work
Because I never had the help to make it work
And I didn’t know how to ask
Until now.

Hugs from Daddy

I spend my weekend hanging out with my sister and parents over the weekend. Just being around people is good for me - it keeps me from getting into a funk. My sister Judy really helped me this weekend allowing me to talk about cancer and she used her other life experiences to understand what I was going through. The more safe places I can find to talk about cancer the sooner all these overwhelming feelings will work themselves out.

This having safe places to talk about cancer doesn't even have to be a place where I can talk but rather just a safe place where I can feel all the feelings. My Dad tries to help by giving advice. I know his intent is loving and caring. But it is in the big hug of my daddy's strong arms that I am able to cry and let some of it out. My sisters may cringe at me saying 'daddy' - but when I was in his embrace yesterday I really felt the love and I wished I could have just stayed in his arms until all the hurt and fear was out. I have a special love for my father, one of real respect and deep love. He has taught me so much that I am really blessed for what he has given me. Even now I can recall that hug and my crying on his shoulder and I can let the tears flow again. My dad may not be able to express his emotions and his caring comes in advice but in those few moments of a hug meant to me that in his way he understands. It feels like when I am in his embrace that I am a little girl who is hurt and a hug from her daddy will make the world all better again.

Thank you, Daddy, for your wonderful hugs.

Happy Friday

Well, I will confess the depression blue blobs got to me over the last few days - I mean really got me. I was home from work yesterday because my gut just ached. So why the turn around. Well, yes I know you have said it to me and I have said it too - excercise! Yesterday wasn't too bad for it. It really does get the breath going and gets the blue blob energy out.

The other thing was dinner I had with a friend. Doing this with any of my friends always leaves my spirit uplifted, bright and happier. But last night's dinner was special. Reminded me to give myself space and time - she gave me permission to feel all the hurt and anger and to try not to push through it faster than I can. She suggested I cast circle to hold my emotions and then give myself the space to talk and yell and cry to the Goddess. But this also help me claim the permission to let me process all of this over a longer period of time - like 6 months to a year. I don't have to solve it all NOW! A similar thing happened to me and my dear minister said to me "take a year to really grieve. Do what you have to to nash your teeth, yell and scream, weep and moan - give your time to get it out. If after a year you haven't begun to move on - then there is something that needs to addressed" Bless her for saying that to me, I felt I could breathe and take my time. Well, that is what I am going to again now - really take the time to let it out.

As a result of claiming this letting go and not holding on to the pain and giving myself permission of time I feel much calmer and not so depressed. I know I said it before that I would let this take what time it needs, but as I was saying it I was also pushing myself to get through it - to get passed the pain, hurt, anger and lessons. I am finding I have to claim things I stages - little steps along the way. I was pushing because I just wanted the emotional pain to go away. Now that I am not pushing myself, the pain isn't as bad. I will try casting a circle for crying and dealing with some of these emotions, I will go to the psychiatrist, and my therapist and my support group because they are additional contained space where I can process things.

A poem by Rumi

This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
As an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out
For some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
Because each has been sent
As a guide from beyond.

Mewlana Jalaluddin Rumi
Translated by Colman Barks

I got accepted at Camp Mak-a-wish

Girls, I have good news! My application was accepted for this camp. Now to get together the airfare. I am so excited!

from yesterday's post:

Now for some exciting news. I found Camp Mak-a-wish, that is located in Montana that provides 4 day retreats for women dealing with cancer. I sent in an application today. The retreat is for free - I need to put together the airfare if I can (that will be a very real challenge for me). Here is the link to their site. Keep your fingers crossed that I get accepted.

http://www.campdream.org/index.html

Everyone likes to be needed

I had a little epiphany this morning - not having a sense of being needed can be contributing to my depression. You may scoff at my idea but it makes some sense to me. I have been struggling with this for a while now - since my relationship with Jeff ended. I have struggled with feeling connected and needed, at work, with organizations I am associated with, even with friends and family. Now you may think I am being a little over dramatic - maybe - but I also realize that this is depression talking. This is feeling of disconnection also doesn't help my feeling alone and my anger about it. It has felt in recent years that no matter what I do I can't break this feeling of disconnect and being alone. For me, right now, it is no small thing to feel needed.

a favor to ask you

I know that maybe it has been hard to listen to me lately as I go through lots of emotional stuff. I really do appreciate your trying to listen and letting me be honest with myself. I am trying to give myself the permission to say it is okay to be where I am at no matter how angry or upset that place maybe.

I had an evening with my spiritual group of women who have seen me through all of this cancer process. Even talking to them this evening it is very hard for me to talk about my cancer with me getting upset and crying.

I think something I am reclaiming after my recent upset is that I am giving myself permission to be where I at with cancer and that I am doing okay healing - I am on the right path. I think my experience with trying to heal a hurt left me feeling thinking I was crazy for speaking up and being honest about what was going on. I was beginning to wonder if I was acting like a victim or too crazy or emotional instead of just trying to deal with the emotional wounds that cancer has caused. Well I have come to the conclusion that it is okay to be where I am at, to acknowledge this is hard to talk about and process and heal the emotional wounds that cancer has caused. It is okay for me not to be strong and stoic and to just solider on. I need to take care of this and as you know I have reached out to professionals and support groups to help me with this.

Here is where I ask for your help. I need words of encouragement and support from you. Call me or email me. Please - let me know if you are proud of me, or if you love me despite everything, Please let me know that for me to be where I am at and that you will continue to support me and to try to understand a little of what I am going through. Or you can tell me something you admire in me or like about me. I could use a little confidence boost from my friends and family right now. Even though I may seem physically fine - I am not fine and I need to hear from you words and messages of encouragement, acceptance, support and love. I know the contact between us has eased off because I really did try and just get back to normal life. Well, I need those phone calls back, please. Or the emails - messages of support and encouragement.

Now for some exciting news. I found Camp Mak-a-wish, that is located in Montana that provides 4 day retreats for women dealing with cancer. I sent in an application today. The retreat is for free - I need to put together the airfare if I can (that will be a very real challenge for me). Here is the link to their site. Keep your fingers crossed that I get accepted.

http://www.campdream.org/index.html


PS: I don't think of myself as being a victim of cancer - but it is the language we use - we are so use to using both the language of the victim or the language of entitlement/priviledge. I just want to talk as best I can about strong and sometimes overwhelming emotions that are coming up because of my journey with cancer. I am feeling isolated because of these emotions and I need your help and support not to feel isolated and as if I where somehow different because of cancer. I try to reach out as best I can and I hope you will reach back to me as I continue to struggle and journey.

two things

I did it! I told someone I was angry, why I was angry, what boundary they had crossed and what they might do if a similar situation happens again. I didn't melt like the wicked witch of the west, I stood my ground firmly. The other person apologized. It was as simple as that. Most important I am not stewing about it now. I said something and that is that.

Other boarder lines - between speaking up about anger and fear and being honest with myself and being a victim - using the language of the victim - not sure where this boundary is. Between being strong and speaking what for me needs to be spoken and sounding like a victim. Where does one end and the other begin?

An insight

Anger is not negative.

I have spent all these years under the misconception that anger was negative and to be avoided, not expressed, silenced and pushed away in order to be a good girl and compliant woman. Well, we get angry for a reason. Anger is a warning system for us. Anger tells us something is wrong that needs to be addressed. Anger can tell us that someone else has disrespected us, dishonored us, crossed an important personal boundary. Having anger means we care about or have a passion about something. Like tears, happiness, and sorrow, anger itself isn't negative, it is what we do with it, that can be damaging. I am trying to learn not to squelch and stuff my anger away behind the "everything is okay" door. I am trying to learn how to express my anger and to work with my anger in positive ways. Anger can be a very creative engery. Anger is so uncomfortable and that can be a reason why I have run away from it for so long. I never learned how to express my anger wisely so that it is a creative force versus a distructive force. I have only seen its distructive side until now - I thought anger only caused hurt and I didn't want to hurt anyone at any price. I was so worried about hurting other peoples feeling that I neglected my own expressing my own feelings.

Time to open this box

This is a phrase my friend Beth used this evening is referring to dealing with all the strong emotions that have been coming up for me lately. She said "Well, it seems to be time to unpack that box of emotions." I love this metaphor and clearly hear a poem in it


Unpacking the box

What was it I packed away?
Anger
Fear
Some hope and faith
Why did I pack it way?
To find again later?
To tuck it away for safe keeping?
To hide it because I just couldn't deal with it?
To keep from falling completely apart?
To keep from spinning out of control?
To get through cancer
I tucked these things away
Because I thought I had to be only positive
I had to find a creative way through this
I couldn't let the negative in
Sometimes I couldn't even let the hope and faith in
It was all I could do
To simply put one foot in front of the other
To simple take it one step at a time
And leave the hope and faith to others
To leave the praying to others
All I could do was do and be
I had to pack it up to get through this
I had to wall it off because I couldn't handle
All that fear and anger at the same time
So I packed it away
behind creativity and tears of terror
Now I have to unpack it
Or it will fester in unhealthy ways
The box started to crack
When a hurt was not healed
Addressed and forgiven
I don't even really know what is in the box
I have some vague idea
but I need to root around in the tissue paper of my emotions
Examine the gift of my thoughts and ideas
Untie the knots in the ribbon
That kept the box closed.....

Being angry

Sorry!?
Am I not allowed to be angry
At anything
But especially cancer
Am I supposed to bare up
With some kind of dignity
Or quiet fortitude
Or outward show of hope and stength
The indignity of this invasion?
To not speak of the emotional tempest cancer wraught?
Of the terror of hearing the word Cancer?
The heart rending possibilities of facing
The poison of radiation and chemotheraphy
Of the mind melt down
When you move from being a well person
Into the no-mans-land of illness
The fear that your wishes won't be carried out
Or that you will either be on information overload
Or miss some key piece of information that could be the difference
Between living and dying
Of my life completely falling apart
And having no idea if I can put it back together again
To feel as if I am branded with a scarlet C
That I can't talk about this because others won't understand
The terror of cancer
To have no clue as to what to do
Or not to do
I am to have a stiff upper lip
Not complain
Not tell you where it hurts and why
Not to ask for caring
Lots of hand holding, hugs
I am not to cry
not to reach out to others
or to pour my heart out
Or to just accept this
To become a tower of strength
When inside I am falling apart
For what?
To simply keep functioning
Show some normalcy when nothing is really normal
And why should that stop
Because I am better?
Because I am healed from the surgery?
But I am healed from the cancer?
Well,
Yes I am angry
For this scars it has left
Not just on my body
But on my feelings
On my soul and spirit
That these words
Like the Balm of Gilead
By getting them out
Down on paper
Sooths the tempest tossed soul
And
Will help me heal
I am beginning to own a part of me
That will make me whole

Creating some positive ground to stand on

I find myself wanting to share about creating positive ground for me to stand on that will help with the depression. In some way this is a push back to much of the hurt I have felt recently but by putting it in a positive light by stating what actions and ideas are positive for me going forward. So here goes:

Let me start by asking myself what positive ground I stand on now?
I am alive
I breathe
I claim the validity of my own process and that it is okay for me to let that process happen in what ever way it happens. I will not be bullied into feeling bad or demeaned about my experience/my feelings or the need to express them. I am not concerned if you think I am being too emotional or dramatic - I have held myself in for years and it is time to just let it out and let it be. Nobody is going to die from what I say or what I feel.
I will have people around me who have compassion and understanding and who are willing to listen with compassion to what I say
I will let this process end when it is over. I will not be bullied or critized for not moving faster then I already am.
I know my process is the right process for me and I will not be made to feel that I am doing it wrong or that what I say and feel is inappropriate, selfish, immature, whining or complaining.
I am doing the best that I can given the person I am.


Now to add to that ground - what ideas and feelings point me to happiness and growing healthier:

I will let this process take as long as it needs to - I will no longer push myself to try to be somewhere I am not nor will I listen to those who think I should be moving on somewhere else or getting over this. It will be over when it is over.

I will express myself and my feelings in what ever way is appropriate for me. This will included everything from rage, hope, joy, disappointment, sorrow, anger, love, deep appreciation, the ridulous, laughter and anything else that comes up. By getting hard-to-say things out of my system helps in the process of letting go of them and gives me a new step to what ever new phase of life awaits me and it gives depression no place to hide.
I will do things that make me feel happy and hopeful.

In claiming this hope:
I have a really hope and sense that this process will bring me to a better place. I know it will. I hope to live life a little differently - with passion and caring for myself - trying to be gentle to myself and to forgive myself the mistakes I made and will make. I have a hope of living my life with a renewed sense of purpose to work toward a goal where other women and myself feel valued, listened to, supported, loved, cherished and honored, safe, particularly from violence against women. I want to move my life in a direction where I can make that happen in a very concrete sense for not just me but for other women as well. I want to try and create a place where things are done differently in a women's circle for the good of women. I want to create a Red Temple for the women of NYC as a place where they can come and relax, make friends, find quiet in the crazy city, be creative, feel connected to other like minded women who are also working to make a difference. I am working on the doing as I dream about this.