March 2nd, 2013

Hi Ya'll

I've been meaning to post for DAYS but life has gotten in the way.

My pain has been increasing daily. I"m going up on one med and trying to go
down on another, but its not really working so hot so far.

I had some emotional conversations with some family members and friends lately and it ALL
contributed to my increased pain. I wish I could explain it better, but what I've learned from my hospice team and from my own experience, is that when I have emotional times, especially stressful or angry moments, then the pain increases and the major fatigue does too.

If I have a few days of those times happening, then it can take a few days to recover from it all.

I had to sadly cancel seeing my Aunt on Monday and Tuesday due to the pain and fatigue. I was crying and very upset about this. My body told me ....no way in HELL are you doing anything today.

I did get to see my aunt, who was visiting from SC, for one and a half very good days. One day I was a shopping fiend. I had to find a nice shirt to go with my beautiful new skirt I bought lately. So that was the mission but then I saw all the major sales at JCP and ended up with more things I didn't think I'd be able to afford. There are MAJOR sales going on there, just for an FYI. $10.00 pair of skinny jeans and another pair of skinny jeans/pants for $5.00!!! Then $3.00 tank tops and the most I paid was for a beautiful sweater that was reduced to $23.00, but it was down from around 60-something. amazing!

I have never shopped like that before. I'm usually so frugal with my shopping and its usually at Goodwill or at other thrift stores, but this was just as good and they are brand new! I had so much fun!

My mom and aunt were tired and sat in another dressing room bench while I tried on clothes and came back to model them for them, no one else was in the dressing rooms, it was so quiet. I felt like I had the store to myself. What it is is I felt like a princess who had her handlers to carry things for her and do whatever I wanted. But I don't think they felt like that. It was nice to feel important and to be able to buy without worrying about spending too much. Such a freeing experience. Now I have some funky clothes that fit. My aunt had said that it look like I'm sick when the clothes hang off of me and if I have pants that fit, then its not so obvious. Shes right.

I had bought two pairs of skinny jeans because the other pants I got not long ago are now falling off of me. They were the pair that I got because my other pants were falling off. I guess its still happening. Weight loss.  :(    The last time I was weighed was a couple of weeks ago at my Osteopaths office and I am down to around 130, I am 5'7"and don't EVER remember being so small in my adult life anyway.

I'm trying to not be too down about it and have fun. I'm finally the size I always dreamed of being. Maybe a few pounds heavier would be better. I don't think everyone should be this skinny at my age anyway.

My mom told my aunt (and then later told me) that she felt like it was weird to be having so much fun when I am dying and so sick, that I look good and we're having fun. Like thats the wrong thing to be doing now. I told my mom that some denial is really really healthy sometimes. We have to live there in that denial world and have fun from time to time. It helps my mood and everyones mood to just forget about the big F-ing C and just have FUN!!! YES!!

It has been harder to be on the computer for too long. It exhausts me, but I swear I will keep blogging for as long as I can and then maybe I can tell someone else what to type for me. I take this blog seriously and I know some of you like reading it.

I may not post as often but I WILL post as much as my body will allow these days.

Today I see my brother and my two beautiful/handsome nephews!! They are visiting and my brother is having HIS documentary film makers follow HIM around and they want to film the two of us hanging out at my place and then tomorrow maybe out on the beach. We'll see how it goes. Its always strange to have a camera in your face so much and try to act natural.

I'm going to do my best and I hope Mark will too. To just be real and not play to the camera and edit yourself as you speak. Its easy to do. My brother used to be an actor in NYC for a while and he teaches yoga amongst so many other amazing talents that he has, but sometimes being totally REAL with family is a whole other ball game. I'm sure it will work out the way its supposed to work out.

I'm looking forward to seeing my nephews too, hopefully off camera.

Well, I'm off for now, got to get my apartment in some kind of order for the film crew to set up and get ready.

I wish a wonderful weekend for you all...... filled with love and LAUGHTER!!!! *I hope you get a kick out of the picture below that I took recently. Sweet Sheep at Wolfes Neck Farm

Blessed Be!

What Will Never Be

So I'm watching a crime show drama and mostly I half listen while I play words with friends or something else, but today I paid attention for the most part.

You know how some people will cry at commercials or during the same song every time, even if played for a million times?

Well, I'm a bit of the opposite. I believe I grew up learning to be strong. Take care of myself at a pretty young age. Due to divorced parents and struggling times. My mom did the best she could at the time and I just ended up alone a lot. Latch key kid I suppose I'd call me back then.

I cried a lot as a teenager, with all those raging hormones, how could you not? Then as life happened and more and more challenging events hit me, I just shut down a bit. I went numb. Very depressed most of the time. I was still somehow able to work at least one job if not 3 at a time. I could put that "face" on pretty well. I worked for customer service type jobs mainly. I could deal with people really well after some time.

I feel like I've survived due to being shut down emotionally. Since my boyfriend died in 1999, It was like pandoras' box had been opened. When Stuart died, I was determined to do what ever I had to do to heal from the grief. I was NOT going to let yet another shitty event in my life bring me down. With help from so many people, therapists at first, I was able to start chipping away at the wall. About 11 months after Stuarts' death, I moved to SC to be with my aunt and uncle who put me to work on their small farm and beautiful property. It was a good thing, to be working on the land and learning how to brush a horse without being panicky. I was nervous about being near a horse for the most part. I learned how to get back up on my feet again. I also learned to love dogs. I had grown up with mostly cats. I was not really a dog lover. I got over that pretty quick with the 4 dogs to teach me. I love dogs now Thanks to my aunt and uncle, I was able to go to massage school in NC. That experience was wonderful for me. I faced some hard times learning physiology and kinesiology, anatomy and so forth.....not easy. I then went on to do other things.....my depression off and on, up and down. Things would get hard and I'd move back home, or towards family. Finally I ended up back home and decided to not move again. To stick it out and face my "demons" so to speak.

I won't get into all my history here, but I was reminded tonight that because of Stuarts' death, I was able to open up some doors that may never have been opened. I did so much work on healing my spirit and soul. There were times where I didn't want to go on anymore but something kept keeping me here. I couldn't understand it, why?

I'm still not 100 percent on the why answer yet, but I am grateful for so many experiences I've had since 1999 and especially since 2010.

I do have some really painful moments even among all kinds of gratitude. Tonight, on the crime drama, this cop gave the most beautiful speech to ask his girlfriend to marry him. It was so emotional, and real feeling.

I started crying realizing that my boyfriend Stuart never got to ask me that question. I never have been asked that question and I never will have that question asked. Not in this body anyway.

Thats enough to make me cry. Even with all my defenses up and controlled emotions, I do cry from time to time. I'm trying to allow the tears to come. Its a work in progress. I'm still learning something every single day.

My "work" isn't over yet.

Nope, not yet.

PAIN and Creativity

Just wanted to say a few words before I went back to bed to rest.

I had a wonderful weekend seeing friends and shopping and doing lots of creative projects.

I mailed out some pictures that I came across recently, to people all over, that I thought would love to have the pics. I'm going thru old totes from my storage. I decided to not read old journals. I was speaking with my Hospice Social Worker and I quickly realized that there is no purpose in reading about pain and suffering that I went thru a long time ago. My SW said that the journal helped and was useful at the time and now its not useful, so I threw them out. I usually only wrote in journals when I was really upset, very depressed or in need of venting feelings, exploring different ways of thinking. Also for writing down things that I couldn't tell another living soul. So, they are gone

Little bits of my past are being thrown away and discarded. They are not needed anymore. I am in a different place in most ways possible. I"m so happy I'm in the place I am in. Emotionally, mentally, spiritually. Those old journals were voices of my past, whispers of a far away time.

Today....

I'm dealing with PAIN!! I think all the organizing, creating, shopping and whatever else was a bit too much? Or, maybe the cancer is just flaring up because it wants to? Its almost like I'd forgotten about the cancer this weekend. Not completely but mostly. Felt good. So maybe the cancer felt left out and now it wants to be in the fore front of my mind. Ok, you win !! Lots of pain this morning, so much,  that I was pacing back and forth in my small apartment, like a wild animal caged. I called my nurse and the hospice office. Finally I got a Home Health Aide to come by and rub some tincture into my back where it hurt the most. It helped some but now its back screaming at me. My nurse wanted me to go up on one of the meds I'm on. It worked for  while, now its not.

I think it may be time to go up again on the big guns....sigh....

Not ready. But don't want to suffer and have everyone around me be miserable too. Having to deal with someone in severe pain is no fun.

I'll figure it out like I always do. It just takes some time to get to that place. I'm going to try and lie down, (on my side cuz i cant lie on my back) for a while and see how that goes.

I'm just having an off day.....Maybe tomorrow will be an ON day? I DO get to see my wonderful polarity therapist, so that will do me wonders i'm sure!

Blessings to you ALL! xo

V-Day

Hi Ya'll

I just wanted to share how my Valentines Day went today.

I think I've mentioned that Valentines Day is not a favorite holiday for me. At least not in past years.

So, I thought I'd try and make today be about LOVE and being with friends. It doesn't have
to mean being with a boyfriend or romantic partner. It can be a wonderful day to remember what love means to so many people in so many ways.


I made lots of new cards with my photography and a friend is selling some (hopefully) at a great event happening tonight. She offered to put some of my cards in a basket. I hope they got seen and maybe some are out there in the world. So nice to think that they will be here even after I"m gone. I know most will be recycled or thrown away, thats what we do with most cards after a while right? I've saved some over the years. But they add up! Especially being a cancer survivor and getting cards all the time, which at the time was beautiful and very much appreciated. Its just that over the last 6 years especially, I would have boxes of them. Some people that have passed, I've kept some of their cards so maybe others will do that with mine? Makes me smile to think so.

I got to hang out with my mom this morning and that was fun! She gave me some special items and one was a small painting of some mourning doves! I had taken a bunch of pictures of "my" doves out my window during the last snow storm and she took a couple pics. I had no idea that she was planning on giving me the painting. Its so precious! I really love it. I feel the love she put into making it too. Thank you mom!

I then had a really good time with my dear friend Gen. We were delayed in getting out and about this afternoon partly due to my intestinal issues still hanging on a bit, and then my sink needed repairing, so by the time we got out, the sun was getting ready to set in about an hour or less. It ended up being the perfect time of day for some wonderful pictures. I didn't have a huge amount of energy so maybe having the light go away was a good thing because I really wanted to keep going. I remember saying to Gen, just a little bit more..... to the corner. Lets cross the street........ and then I looked up the street that has a bit of an incline and knew.....nope. Not a good idea. I did do quite a bit anyway.

Gen was so flexible with our plans. She bought us both a hot beverage and a fancy schmancy cup cake. They are known for having expensive cupcakes so we were both reluctant to a point. I tell you what....that was an amazing cupcake. I think it may be worth the price. YUMM! I feel like John Travoltas character in Pulp Fiction. "Thats the best five dollah milk shake I ever had", or something along those lines. Happy Birthday tomorrow Gen!!

I was sent some fun pics on my phone of my step siblings out on their Valentines' dates. It was so joy-filled and I saw LOVE. So great! I know this sounds like I"m on ecstasy or something, but I assure you i'm not. I just sometimes feel like I'm getting it for the first time. Some say that as you get closer to the other side that you gain bits and pieces of the reason why we humans are here on Earth. What the real purpose is. That bits of information come at you and then when you DO die, then you get a LOT more info on the big picture. I don't know if it would be ALL of the "picture'.

Who knows but something inside me feels like this is true. I keep having these moments of just "getting it".

As Oprah says...."an Ah-Ha moment"

Thank you all for reading and for posting comments

Happy V-Day Everyone!

Happy V-Day!

Happy Valentines Day! I took this shot during a blizzard the other day. Its hanging from my window

I love that I can still take photos and create my art even if I'm snowed in my apartment. :)

So I've never liked Valentines Day. I may have mentioned this before and I'm sorry if I'm repeating myself. I've had other friends along the way who also hated it so I used to have Anti-Valentines day parties and go the nine yards...wearing black, can't touch one another if you are a couple, i passed out hand made hearts with cracks thru them for people to wear. Played love stinks in the back ground....you get the idea.

I think back then I was just sad that I rarely had a boyfriend on THE DAY. And all the pressure that goes with getting presents and receiving presents. I remember when I worked as a bank teller a million years ago, we'd all see the flower delivery person come in and try and guess who they'd be for and how good the arrangement was. Like it was being judged and then if they weren't all that...then the relationship would be judged. Are you kidding me!? wow!

Such pettiness.

The last few years I've tried to embrace it a bit more and not be so scrooge-like and angry about it.

I'm determined to look at things differently on my last valentines day. No I don't have a boyfriend who will buy me roses or make love to me by candle light, but I CAN think about love in general. Love for ALL beings who exist in my life and not.

So, ok....

Love.....

I love that most mornings I wake up to see my cat next to me on my bed even though he can barely fit due to his size and me being in a hospital bed that is a twin size. I love that.

I love that most mornings the mourning doves out my window are waiting to get fed by me and just sitting on the tree out my window staring in at my window when I pull up the shade. I love that.

I love that there is a secret valentine post-er who posts regular sized white pieces of paper with a big red  heart on it, all over town. EVERYWHERE!!! I love love love that! You never know where they are going to be. On every business and window and store front and usually there are some challenges. Last year I think it was, there was one way way up high on our local museum, it would take a very high ladder or maybe theres a door up there that I can't see and this person has connections? The challenges are most fun. But it makes people smile so why not? Its been happening for years and years now.

I love that my digestive system is almost calmed down today, so i'm not in severe pain and exhaustion that i was for almost two days straight.

I love that I will be seeing my mom today. She already let loose that she painted me a picture of two of "my"mourning doves. I can't wait to see it!! My mom is a wonderful painter.

I also love that I will see my friend Gen to go do whatever. We are both photographers so we both, being single, have vowed to try and focus on LOVE when we shoot today. Maybe finding some heart shaped rocks or shooting what love looks like? Its also her birthday tomorrow, so I will be so happy so see her open her present and I hope she doesn't already have it. Fingers crossed.

I love so many people in my life who love me even though my brain isn't cooperating too well lately and has caused me to be cranky and irritable.

I love my hospice team who are there for me lovingly and not judging me or being rude to me. Compassionate. So important.

I have to say that I REALLY will be happy when its over. But for today I will try my hardest to let the negative feelings go about V-Day and enjoy it for what it is.

I hope you all have a great day too!

I'd love to hear any posts you may want to leave. Even if its just that you are reading the blog, would be wonderful. I'd love to visualize who is reading it. Thank you!

I also took this photo during a blizzard on the inside of my icy window  <3 p="">

Stress

I'm feeling a LOT of stress lately.

My hospice nurse and social worker both have mentioned that it will most likely be
harder for me to not have a primary care giver to help with SO many things and I'm
definitely feeling it and getting stressed out about it. I'm at the point where I want to throw up
my hands and say I"M DONE!!!

It seems that the scheduling that is happening on my eHope site is getting out of control

Also there are people who I REALLY want to see who don't seem to want to book any time at all. I don't want to pressure anyone......

but.....

I am dying and running out of time. I wish I could see some people and make some more memories BEFORE I become bed bound which I feel is coming in a few weeks or so. Makes me so sad that some people don't want to see me and maybe they are scared? Maybe they don't think its that crucial and they are waiting to see me WHEN i'm bed bound? I wish they wouldn't wait. Maybe they are done with the happy moments and only want to see me when i'm in bed. Is that easier on them?

I want to visit while I'm still ME, while I can still laugh and be silly and have good conversations. That is starting to change lately. My memory and finding words to express myself is getting harder.

My Buddhist Chaplain woman from Hospice says that as soon as you say "want", that a barrier goes up. It's not accepting whats happening and letting it unfold naturally. Easy to say when I am the only one to do all the nitty gritty scheduling and figuring things out.

I wish I COULD just sit on my meditation pillow and just let life swirl around me and not care so much. If I did that, then things would fall apart. My cat wouldn't get fed and my chores around my apartment wouldn't get done. And everyone would disappear.

I feel like I can't please everyone. No matter what I do, it seems to be not enough, or the wrong way.

I'm so anxious if you can't tell, LOL, and I don't want to be. I want to just tell everyone "forget it! I'm done", is that what you all want from ME?

Maybe I just need to crawl into bed and start the dying process? Then maybe people in my life would have it easier. I would shut up and be quiet and then they can start grieving my imminent death. Is that what I "should" do?

I still have a voice, I still have opinions, I still have art to create, I still have fun moments to be had if I can find certain people to spend those times with, I still have a lot more to do, soon I WILL be bed bound, but until then, I want to see people and not see other people due to being stressed out. I don't want to feel like a project  that has to be done. Nor do I want fake relationships. We can't make up for lost time and repair relationships. Thats over. That will not happen in the way that some want it to.

I'm dying.

Its really happening and I think some people out there aren't realizing this and want to just go about their business and not look at it.

That just makes me so incredibly sad. Deep Deep Sadness.

I don't want this to be it. I want to create more happy memories. Why is that so hard to understand?

Why are some people overwhelmed by whats happening with me and taking off and saying goodbye in their own way?

I take it so personally, like I'm just too much for them to handle. Like I've done something wrong. Its the FUCKING cancer that has done this. Not me. Please don't leave me. I'm scared and want people around me that want to share love and joy. Not stress and demands.

This is IT for me. No,..."I'll get to it later on this year." Not for me. This is the time. NOW.

I'm so tired and the pain is increasing every day.

I don't want to be a burden on anyone. I just want to share love and happiness. Thats all.

Why is that so hard to do?

When demands are put on me, I push back and will continue to and if i get pushed too much, then the visits will stop.

I can't have toxic energy around me. I just can't . No matter who it is. No matter what their title in my life is. Blood or not blood related.

This may sound harsh and some of you are wondering if this is about you.

I need to express myself and I try not to use names and I try to come from a me place but today, I at least need to express why i'm stressed out by still not using names.

I DO LOVE so many people in my life who are willing to wait in line and see me when they are able to.

Thats it for now......

I think I need to nap and try and calm down.

I think relationships in my life are changing or will be drastically changing soon.

I need to do whats right for my stress level and for what little time I have left here in this body.

Blessings to you all.

Writing at 5:30 AM during a Blizzard

Feb 9^th 2013

Visual…….I have this vision of people gathering at Kettle Cove beach or Ferry Beach at sunset, if possible….and having a bunch of my family and friends light paper lanterns that float into the sky. Sending out wishes for me to get to the light safely and maybe wishes for YOU, for healing or whatever is needed.

There are also lily pads or paper boats that you can put candles on and send out into the sea or down a big river as well. The visual of all the pretty candles lit in my honor makes me smile BIG!!

Some days I wake up feeling better or forgetting I have cancer and think, “well, maybe I’m getting better? Maybe its going into remission?” Then pain will come flooding in and so forth. I was speaking with my social worker about it and she said it IS an up and down kind of process. Some good days and some bad days and then there are less and less good days to enjoy, so when I DO get good days to really take advantage of them.

I was wanting to eat like I used to, the other day, and that failed. I ordered chinese food and had some ice cream. That was something I would do literally once a month and when I tried it the other day, it didn’t work out so well. Felt really ill.

I’m still eating crap and I think its due to lots of personal family/friend issues. I gave myself a week to not care about most of what I’m eating. Its now turning into two weeks.

Most of me is saying.”who cares?!” I’m going to die anyway.

But….if I eat horribly it will only make me feel horrible. There IS a connection. I do tend to eat emotionally. Sometimes I don’t see the harm, but when it gets to be too many days in a row, I need to look at that and internally see whats really happening with me.

I went to see Life of PI with my brother and his family and it was pretty difficult to get thru. Mostly due to the subject matter. But also my body felt awfully tired and in pain. Couldn’t sit still for very long. I had to make it for 2  hours plus….

I’m being constantly reminded and challenged with how much I can or can’t do lately.

Not very much fun I’ll tell ya.

Its my new journey now. New way of living.

I was speaking with my Hospice Buddhist Chaplain and she was saying that most of the people she sees, end up seeing someone who is from the “other side” before they die. There are sometimes people who show up whom you’ve never met before. So I’m excited to see who will show up to hang out with me as time gets closer to the end of this life time. I am sure that Stuart will show up. I’m hoping my grandfather Claude Murray and my three friends Linda, Eve and Lina show up too, those three died of cancer. They were incredible people who helped me in so many ways, to get out of bed every day when I was in treatment. They were mother figures and friends and sisters and whatever title they seemed to me…….very special people in my life.

Saying good bye to everyone HERE is going to be the hardest part. Of course the pain and physical body dying won’t be a picnic I’m sure. I just can’t imagine saying goodbye to anyone I love right now.

Too big.

So, as I hear the wind howling outside and the snow is falling at an inch an hour or more……I’ll think about how lucky I really am to have heat (right now) and a warm fuzzy cat to snuggle with and so many wonderful people in my life. My mom and I had a lovely visit seeing some sheep and goats that I love so much and going shopping a bit too., yesterday. Those little things are what help me get thru each day. Connecting with family, friends, nature , which includes animals.

My mourning doves are taking shelter somewhere else thankfully. They were huddled out on my window ledge yesterday until sundown. I had opened my screen window half way and then put my inside window down so they’d have a little bit of shelter. I hate thinking about the animals huddled together, waiting for the storm to end. Could be another 12 hours?

Blessings to you all out there!”  .......Photo by Matt Weber