One More Day

So, just a quick hello and to say that I am so excited about my film being shown tomorrow night. I know I gushed about it in the last post but I just wanted to write about it a bit more.

I feel like the film gave me a chance to see a side of me I've never really seen. Possibly how others may see me and I was given the chance to see that too? I cried thru most of the film. It is just so
beautifully made. The editing was right on. The photography and cinematography is breath taking.

I suppose I'm still not believing that these film makers wanted to film me. They thought it was and I was worth their time and money....... to invest in this project. Even if it was only a few days of shooting, there are still many hours of producing/editing etc...

I am humbled and just so grateful to them for their support and belief in me.

So, I want to say a big thank you to Wonder Dog Films, Thank you both so much!

So much love to you!

Sunday

Hi Ya'll

Well it's Sunday and the last few days have been hot and humid! I had my space heater on on Wednesday due to the cold rainy temps and then on Thursday it suddenly became Summer. Hot and Humid. Friday was the worst. Temps got up to the 90's here. Unreal! Maine tends to do that but I also suspect Global Warming has a play in it all too.

Luckily my dear friends' husband was able to put in my A/C from my basement, 3 flights down. I would not have been able to stand it. My lungs would have been in big trouble. I went out early Thursday morning with my mom and I had some trouble breathing then. It does get a bit isolating being holed up inside when its so hot. But i'm grateful to have the cool air.

I did get out to run errands and yesterday I was able to get some shorts, a skirt and a dress at the local thrift stores with my friend from NH. I realized I had no Summer clothes that fit anymore. Nothing. Not one skirt or pair of shorts or capris, nothing. So, we fixed that real quick. I was so happy to find some things that fit. Once again I went down in size. Its so odd to think I can fit into something so small. I brought the clothing items into the dressing room with so much doubt but then when the zippers closed without trouble, it was astonishing really. Mixed feelings for sure. Maybe thats why so many clothes fit me and I had so many options? I don't believe its right to have so many options for people who are small or thin. When I was 35 pounds heavier last year or so, I always had trouble finding clothes that fit that I liked. Our way of thinking what is the normal size really needs to change.

So, to update you all a bit. I went on a new med again...well, it was the same med as a while ago, except now it isn't in the pill form, its a constant stream going into my PICC line and then when I need an extra boost, I push a button to give a small dose to help with the spiked pain I'm experiencing.

Well, my body was not happy about changing meds so abruptly. I went into a major mood change. I did see on the side effects that mood changes are one of the possible side effects. Oh boy did I.

Over the Memorial Day weekend, I was not in a good space. I tried to reach out to some friends and family but I feel I didn't communicate well and it seemed to back fire on me. I did ask for my mom and step dad to come over a couple of times just to have someone around and they did for a while a couple of days. That helped a lot to have someone here.

My body was just wanting to reject a new heavy medicine. It needed time to balance out and get used to it.

Its mostly got used to it but from time to time I do feel those feelings come up. I'm trying to just keep busy and positive. Not easy when the fatigue is so high.

One thing that has kept me hopeful and distracted is that my Documentary is being shown this coming Tuesday on a big screen for my friends and family that can make it. It will be on DVD soon as well. So I will be able to loan out the DVD to those who can't make it Tuesday.

I am so nervous! I know its a beautiful film and I love it so much. I just feel that stage fright kind of thing. Knowing that about 20 or so of my family are going to see ME on a big screen and listen to ME talking about things I'm passionate about. I'm so used to being behind the camera in my family of actors and performers. So this is a new experience for me.

I am really confident lots of people if not all that go, will love the film. I'm hoping it will also speak to my belief of having a choice and wishing that all states were able to have the Death with Dignity Act or whatever they want to call it. My film (not really just mine, the wonderful film makers too) doesn't throw the belief into anyones faces, its subtle but still speaks about my belief, which I love. Its funny and joy-filled as well as some sad reality based moments of that fact that I am dying.

All of that in about 20 mins I believe. I still haven't got the exact running time. I remember seeing some YouTube films that are five minutes long that have touched my heart deeply, so it doesn't have to be a long film to make an impact.

I won't be able to go to the film myself. I'm not sure I mentioned that or not, in a previous post, due to it being shown so late, but mostly due to not being able to have more than a few people around me visiting or wanting to hug me and wish me well. I am imagining if I were there my wonderful friends and family would want to hug me afterwards and tell me what they thought of the film and it would just be too overwhelming for my vulnerable nervous system. I get overwhelmed very easily now. I hate that I can't be there. I would LOVE to see it on the big screen. I would LOVE to receive all the wonderful feedback and love afterwards. My reality just doesn't allow for that to happen. One more thing I have had to grieve. I do look forward to hearing what people think, via email, phone, text, Facebook, whatever way someone wants to communicate their thoughts with me.

I will be home biting my nails wondering how its going, but in an excited way.

There is no way I could possibly thank the two amazing film makers who made this happen for me. It really is something so incredibly special and healing for me to go thru. The whole process. To filming it all and then to see myself on screen at their home and to speak with the two of them about so many things. To get to know them as well. All of the process has been beautiful. I will never forget it all.
EVER.

My cat Stewie is also in the film. So sweet. He is quite the ham and a bit of a diva now. I bet people will want autographs made. I'll have to get one paw print made and then copy it.  lol....not really.

He does seem to know something has changed and is being a bit demanding lately. Wanting to be brushed all day long. :)

My moods are still up and down lately. I know it could be situational and not just due to the medication, but somehow it still feels like the meds. I really have no choice but to go with this med or the one I was on before. I think sticking with this one is a good choice for now.

People have told me that I am really living my life now and not just giving up. My Social Worker says that a few of her clients will just be miserable and not talk with anyone or just be angry all the time. I really try not to be but certain days I do want to just yell and scream. That could be a good way to let some of this pent up emotions out. Maybe just not at someone, into a pillow or go throw some eggs at trees or ice cubes ...... something.

 Well, for now the sun is shining and I'm going to see one of my nieces today along with her mom, so that will be good. Maybe we can go to the ocean and I can stick my feet into the water. I will pray the humidity won't keep me from doing that today.

I hope you all have a lovely day today filled with laughter and love.

Exciting News!

Hi Ya'll

Well, I have had a jam packed weekend. Why do we say jam packed? I'll have to Wiki that....  lol

Saturday I had some wonderful friends come over to play their harmonium and drums and sing Kirtan with me. I felt so so honored to be there. Like my own private concert, but not, because I was there singing too. It felt wonderful to sing and be amongst the music and chants I love so very much. I had resigned myself to never going to Kirtan again. It happens at night and nights for me are not a good time energy wise. I usually am extremely tired and not able to socialize at all. Everything is overwhelming. But on Saturday afternoon I was singing for a while until my body told me to stop singing. The pain kicked in pretty good. It was so worth it though. I'd do it again and my friends said they want to come back again, yay!!! Can't wait! I felt such a great energy during and after Kirtan and felt so blessed and grateful. Namaste S&F!

Then on Sunday I was picked up by one of the film makers who created the documentary I'm in and brought me to his house where his wife and he lives. She is the director, editor, producer ..... and he (I will keep their names anonymous for now not knowing if they are ok with me mentioning their names or not) is the Cinematographer and Videographer.

Both of them are such lovely, wonderful people. I love their home too. Great energy. They have this sweet black lab named Jack.

I spent some time looking around at all the items and designs in their home. I just love to do that. It tells me about a person, their character and passions. We got to the room where we were to watch the film and I was SO nervous. I kept squiggling in my seat. They were both nervous as well. What if I don't like it and so on..... I was wondering if I'd like it and what would I say if I didn't?

Well, from the first minute, I knew I was going to love it. I also started crying about 3 minutes into it. The emotional ride I took, for however long the movie is, maybe 20 mins? , was indescribable. I was taken on a journey by surprise, in such a wonderful way. By the end of the movie, the three of us were crying.

I feel I'm still processing it and want to watch it over and over again. I will when I get a copy of it. Its still not completely finished. Some tweaks and turns need to be added, mostly technical things I believe, then I'll get some copies. But basically I saw another side of myself I hadn't seen before. I saw a woman who was strong and independent, and chose her decision from her heart. A person who made the correct decision for HER. A person who loves people and animals and the earth and wants to do good in the world. I knew that about myself on a certain level, but to be shown it to me on a screen was so incredible, I just can't explain it completely with words. I will be forever grateful for these two wonderful people who made this film at no cost to me or anyone I know. They were called to make this film. I just love that there are still people out there who are creating works of art like this and are not asking or demanding , as some people do, some monetary gain.

A wonderful thing is that there is a person who is fighting for the Death with Dignity Act, or whatever they call it, in Vermont. These film makers have some connections with this person so maybe he will see the film and just maybe he'll want to use some of it or all of it for his cause. I would be so HAPPY to think I left something behind that made a difference in the world. Happy doesn't really cut it.

So, for people that know me personally and are not on the website that helps with chores etc.....a local site.....and that want to see the movie, please contact me. I need to get a number soon, of people who want to see the film on a big screen within the next two weeks, we are thinking that would be when we could get a room rented to show my peeps. Please contact me via email or whatever, asap and say that you are in town and could possibly see it. I don't have dates yet to give you. Soon.

I am still floating in the air with all that has gone on this weekend.

My wonderful nurse said that when I have a jam packed weekend, I will most likely pay for it physically for two-three days, I know what she means. I am soooooo tired and sore. It was all emotional and yet it affects me physically. Amazing to me but its true.

Other physical things happening is that my knees are wobbly. They sometimes feel like they want to give out. I have twitchy fingers. My nurse said if I wanted to and were ready, I could get a "snazzy" cane. A cane?! ohhhh no. I don't want a cane, unless it has a dolphin top.

Sigh...

My physical body continues to do its thing whether I care or not.

So, I will focus on the film, singing and hearing music and reading lovely and supportive comments from all of you! Thank you!

Love Love Love

Finales

Hi Everyone!

So, I had a PICC Line put in my upper arm two days ago and so far its not horribly annoying. For some reason the alarm that says the cord is being pinched is going off when I know in fact the cord is not being pinched. It woke me up several times during the night. This will not do. So, other than that it's not too bad to deal with. I have the same bag that goes with it and I"m still naming it Bob, now its Bob with an attitude.

This week, for those of you who watch t.v. and yes I do, gasp...I know how horrible it is for ones brain and all but living alone and for many many reasons, I do watch some t.v. I have tried to cut way back and for the most part I'm doing pretty well. For one I don't have the capability to keep my attention on any one thing for too long. So, as I was saying, for those of you who DO watch the metal glowing box, you'll know that it is Season Finale time. That dreaded time when you know that someone may be killed off the show or someone may or may not be dead and you'll have to wait till next Fall or later to find out if they did die or not. Or maybe it's one person over another that will die. You start thinking, "Well, if that person died then what will their wife do .......blah blah, but if that person dies then what will he do at his job as a helicopter pilot....blah blah blah....," you get the drift. Well, it can be a bit stressful,....then you think, "It's just a t.v. program". But the networks writers' and producers know how to suck you in and keep you guessing, with the music and sometimes really great writing. Nurse Jackie on Netflix got me laughing out loud last night which I really needed btw.

Last night there was the example of Greys Anatomy.....I won't give away a big spoiler but I will say that someone DOES DIE. OMG! I saw it coming too. Such a bummer. But at least there were no cliff hangers, that I can remember anyway....., so I don't have to wait till next Fall or later....which I can't do anyway, so thats good.

It just got me thinking about all of this silly stuff we fill our brains with. Its like candy at the movies. We didn't need to get the large box of chocolates but you do. I didn't need to watch two stressful season finales, but I did. I wanted to escape from my drama and go to someone elses' made up drama, just for one night, or maybe for most of the week, and then I'm done. Mostly. LOL Of course there are DVD's on Netflix to catch up on from now on......:)

I have recently started to listen to my podcasts more often which are fantastic. I'm making more of my greeting cards from my photography. I'm meditating more. I'm trying hard to organize my paperwork so that others won't have too much of a burden to deal with later.......I feel like when I say LATER in my head, I want someone with a microphone who can make that sound like its in a cave, say it that way......its so ominous.

What I guess I wanted to write about today was that I most likely won't be here to see what happens next Fall or know what the next line of cool fashion will be for back to school kids. There is so much to enjoy NOW. It is my mantra. I am in no way perfect or do I walk the talk all the time. I write this blog to remind myself and if I can help someone else, then great!! What a joy! We are all trying right?

It is hard for me emotionally when I am faced with the future questions from all around me. What will you do when Summer hits? What about Fall? What kind of harvest will you have from your garden? What kind of birthday party should we plan for so and so this Summer? etcetera.

So much I never realized was going to be all around me. All the questions and the silent moments when both of us (whomever is talking with me) realize that is not something I have to worry about, most likely anyway.

What I am striving to do now is to smile and nod and just try and not get sucked into the unknown future that some people or manufacturers want me to ponder. And all those expectations we put on ourselves. A dear friend reminded me yesterday about expectations. That's another post for another day.

I do love to ponder all the what if's.....but the what if's haven't happened yet.....I know some of the people who are reading this who say time doesn't exist and so forth.....I know, but humor me for a sec....lol.......in my conscious mind the what if's haven't happened yet, ...what if.....lol....there is another 911, Time will stop and all those future worries won't matter. Or another columbine or Katrina, or you name it.

I look at my future, which I DO have, even if its for one day, one hour, two months, 3 weeks, who knows right? I DO have a future. We all do.

Sometimes It's ok to get sucked into the unknown fantasies and today I"m going to try hard to stay in the today world of ME.

Does that make sense?

Blessings to you ALL!!

And could someone tell BOB with an attitude to stop beeping at me? Thanks! :)  XO

Mothers Day

Hi ya'll

Wow! I knew it had been a while since I posted but this is longer than I realized.

I've been trying to balance my life out a bit. I find I'm booking too many visits and
with hospice visiting, I'm exhausted at the end of most days. I also have had a major
increase in pain and fatigue. I'm not sure which one is more upsetting. I'm beginning to
think its the fatigue. It annoys me and gets in the way of me wanting to do things.

Hospice did tell me that the fatigue will creep in and will get more and more advanced as
things go forward. After about 2-3 hours or so in the morning, I feel like I need a nap.

That isn't supposed to happen to a 43 year old? Only to an 80 or 90 year old.

My nurse says its the cancer eating away at all the energy I have. The cancer thrives off of my energy she says.

I wish it was only during the night time. I am adjusting things so I can write more often on my blog. I hope this works out.

What I'm doing now is scheduling my appts closer together if they are short visits and that way I can take a nap before another major visit. Also if I have two longer visits I can sleep in between and then hopefully have more energy to write on my blog and take photos and so forth.

It feels still like a dance. It started out as the Rumba, and now it feels a little like the Waltz with a touch of Salsa thrown in.

So today is Mothers Day and I want to say a HUGE Happy Mothers Day to all the mothers out there. Also to all the step mothers and foster mothers. I have a wonderful step mom whom I love dearly. And finally if you are a mother to a furry friend or any animal critter, I believe we all deserve to be recognized for our giving and loving to those in need. Happy Mothers Day.

My mom and I had a lovely morning. It was of course bittersweet, being the last one. She came over and made us some breakfast. It really was a joint effort. If you saw my kitchen you'd see why. I was holding plates and handing her utensils and so forth. Much like an operation at a hospital. Pretty funny. We got some laughs out of that. Whenever we laugh together is a good good thing. I gave her one of my cards that I spent a while writing out. You can imagine how hard it was to write the last mothers day card ever. Not easy. I also gave her some calla lilies and a gift card to a sushi restaurant she and my step dad like to go to.  I think my favorite part was when she read to me. She read one of my favorite books, it may be my all time favorite, not sure......Anne of Green Gables. The writing to me is so fluid and filled with colors you don't need to try hard to imagine whats all around you. So beautiful and funny. I just closed my eyes and listened to my mothers voice read to me. She has a beautiful voice. She has been in so many plays and read poetry aloud and so many things. Gorgeous voice.

One thing I told my mom today was that the pain is really hurting badly and its hurting where my shoulder blades are, now on both sides and its like a bad bad sunburn under the skin. Pulsating pain. I told my mom that for some odd reason it feels like my angel wings are coming in and she said it at the same time, the wings are trying to come out and so I can fly away to the next dimension unknown to me right now. I like to think of this and maybe it will help with the pain at times. I'll try anything to calm the pain down.

I vow to also get back into meditating more often.

Well, thats it for now. I hope not to wait too long before I write again. When I do, I may have a PICC Line put in my arm area. I'm nervous about it going in but i'm sure it will work out ok. It's being put in on Wednesday.

Have you been listening to the Spring Birds coming in to greet us all? Its so beautiful to hear. I heard a few cardinals and this afternoon the oddest thing......a bluejay talking with a mourning dove. I'm not kidding. So sweet to listen to.

Blessings to you all!

Pic below of me and my momma!

Planning for the future?

Hi Ya'll

I was with a dear friend last night and I was talking with her about how do I plan for a future? How do I move forward in ANY way possible? I suppose I could look at my souls' continuation and what does it need from me.

I just want to sleep and is that OK? I went out with my step dad yesterday to run some errands and we had a wonderful talk, as we do quite often, about life and its' struggles and also remembering lifes' beauties. Then I was off to my next appointment.

I got back and my Hospice Social Worker was waiting for me. Then my nurse arrived, then before she left my hospice home health aide came by. It felt like a full day but not really, it was just getting thru appts and hopefully with a smile on my face.

By the time I had a break to take a bit of time for me, it was around 2:15pm. That may sound like nothing to you all but to me it was a full morning and early afternoon. So I needed to lay down for a nap. I got woken up by a phone call from my friend in London who was supposed to call me at 3:00 but apologized for calling at 3:30. I was in a very very deep sleep. So when he called, it really thru me off guard. It was one of those calls, ....the kind where you wake up out of a deep sleep not knowing who you are or where you are or what is supposed to be happening. My friend asked if I was ok and I said yes but that wasnt the truth. I was losing my mind I felt like. So, I only slept for about an hour and 15 or so mins and it felt like 5 hours and extremely deep. I immediately felt bad because I wasn't feeling fully coherent.

We figured it out soon and I straightened out myself and had a good phone call. But to be honest it scared me. I wasn't sure what was happening for longer than seems "normal".

Anyway, enough of that, but its those kinds of changes that have been scaring me lately.

I cried and cried last night as my friend listened and said she will "meet me where I'm at". I so love her. No judgments and no trying to fix. Just assuring me that she is there for me and that is huge. I don't want to scare people away by being all emotional at night, but night times seem to be the most challenging right now.

So far I'm not lashing out at anyone or being abusive.So thats something. LOL

But seriously....I don't want to become that person who will do such  a thing to anyone I love.

My friend said I have a LOT to cry about right now and its ok to cry. I don't expect anyone to fix anything or give loads of advice, just sitting with me and listening is enough sometimes.

I was very stuck and depressed on Saturday and I tried all my skills of trying to get out of it and nothing seemed to work, so I just called Saturday a loss.

Sunday, I woke up and said to myself...."I want to go fly a kite today!". So the people I was scheduled to see were game. I went to a local drug store and bought some silly cheap-o kites and they worked! I didn't crash one or hurt anything! There was a local kite store/company that was showing off their kites and stuff, so they got a bit into our space but other than that it was really fun!! I have been wanting to fly a kite for years and have always made excuses......."I want a REALLY nice kite",  or" I don't have time" or whatever the excuse is.... Sunday morning I decided it didn't matter. I'm so happy I went with my gut. I did almost crash into the kite companies' nice kite with one of mine, me not knowing what I was doing and how to move the kite, but luckily I didn't crash it.

There was one sad moment, or maybe it is considered two. The little girl with us, sweet as can be, asked if I wanted to go for a walk. It was getting near to when we were leaving and I knew my body was not going to be able to do that at all. I told her a few times and then her mom stepped in and told her I was too tired. I felt bad not being able to fulfill her wish. So after the two of us looked at this huge fish-like-being that the kite company had filled up with air and was hovering above ground, I thought I"d try to make up for not walking and just skip back to our picnic table with her. So we held hands and I tried to do so. My legs were just not able to do what my brain was asking it to do. My body was too tired. I tried and it worked out ok but it was such a disappointment.

It reminded me of when I was in Radiation Treatments and I had neuropathy for a time, my legs wouldn't allow me to run to catch a bus one day to get to my appt to have RADS treatments. It was such a strange feeling to expect your body to do something and have it not comply.

I tried it again yesterday, skipping, and I was able to do it. whew! It was only just that I was over tired. Still not working 100%, but at least I can still skip if I'm not over tired. Yay!

So, I've had an up and down week. Depression on Saturday, Kite flying on Sunday and some fun the last few days with a few tears here and there which made me feel better.

Thank you all for reading and I hope you are allowing yourself to be where ever YOU are. Just because it's Spring does not mean you HAVE to be happy. You are where you are.

Blessings to you all
OH, and a BIG Happy Birthday to my Dear Dear friend Nancy! I love you !!!

More Filming and.....

Hi Ya'll out there that take the time to read my blog.

:)

So, from the subject line you can see I mentioned being filmed more. Yep, the wonderful filmmakers that have filmed me came back for another hour and a half or so, to film more. I was nervous and you know when you have a conversation with someone and then they leave or hang up the phone....then you think..."oh, i could have said that better, or why didn't I say that instead?..."

I had a few of those moments after they had left. I figure that whatever I said will be good enough and no one can say things perfectly. Plus i"m not used to being on camera so my skills in that area are slim. So, whatever they got will have to do. I did tell them if they want more film from me to let me know and I can work something out.

I also believe its hard for me to articulate anything lately. My body is definitely, as my social worker mentioned the other day, eroding and dying from the inside out. My brain feels like its been shaken like a snow globe at times. I get dizzy and when I try to find the words I want to find, It feels almost impossible. Then other times I can have decent conversations.

I have been emotional as well. I feel like I'm not me anymore. I'm changing. My personality is changing due to the stupid f-ing cancer as my friend Joe likes to say. I schedule things on my calendar and then realize, sometimes too late, that I've scheduled too much for me to handle. I then cry and cry and say "Why can't I be that person again?!", "Why can't I handle these appts like I used to be able to?!".

There is just sooooo much to let go of and accept every single day.

I hear of peoples' stories of how they went to the beach and played with their kids and how they went to see a wonderful band play at this local club and I truly am happy for them. Then a part of me wants to scream and say "Why can't I do those things again?!"

What am I supposed to be doing now? I am a person who is dying but is alive. What does a person do in this situation? There is no "supposed to", right?

I have been having day-mares as I call them. Horrible day time night mares that seem so real. They are mostly about people I know, which makes it even more scary. I have visions of these people I know coming at me with knives and guns and wanting to hurt me.

My polarity therapist says its my fears wanting to be released. This is how they release she says. Well, I don't like it at all. Who would right? LOL

I am in pain right now, so I had to just push the button that gives me extra morphine. I hope that helps. I don't want to stop writing/typing.

During the day I have been extremely fatigued. Thats partly why I haven't written in a while. My hospice nurse says that's due to the cancer and not the meds. I want to sleep all day. Soon I'll have to pare down my visits to probably one a day so I can sleep more. My body is telling me, or I should say shouting at me to sleep more.

I feel like all I'm writing about is the negative stuff....I don't want to make anyone depressed.

An old therapist is now talking in my ear saying, .."Jenn, you can't MAKE anyone do anything they don't want to do."....ok, ok...LOL Thats true. I can't. But you get what I'm saying right?

I have another friend that wants me to be very very real, to be as dark and negative as I want to be.

I get that as well.

I believe I am both dark and light. Aren't we all?

Finding that balance is what I believe I am trying to do lately.

I told the camera that was filming me that even when I'm in my room and can't go out on an absolutely beautiful day, that there is still beauty all around me. I've been taking pictures of things all around me. All you have to do to find beauty is to STOP, CLOSE YOUR EYES, BREATHE, OPEN YOUR EYES AND LOOK AROUND VERY VERY SLOWLY. You'll find something beautiful. Whether it be a shadow on the wall. The colors the book case has. The plants that are reaching out towards the light. There is so much beauty if only we just stop. When I am in so much pain. I have no choice but to stop. I can choose anger and self pity. Sometimes I do. Then sometimes I choose to just stop and look around and find something new I haven't noticed before. Distract and also choose to see the goodness of something. Sometimes it feels impossible to do and I choose to eat a huge bowl of ice cream. LOL ,There's nothing wrong there either. I will choose to not eat ice cream all day as well.

It all sounds so simple and maybe a bit nutty but for me, it helps manage the pain, it helps to get up off my pity pot.

Well, this is all for today and hopefully I won't take so long to get back to you all.

Is there one thing you can see around you that you think is beautiful?

Picture by me....jenngie designs