Monday, September 30, 2013

An Ending

This is Jenn's friend, Nikki (aka Starcat), writing to let you know that Jenn passed away in hospice on September 24, 2013 at 4:22pm, peacefully, surrounded by family and friends. We will be keeping this blog up so that people can still discover it and be inspired by her amazing story.

Here is a brief look at her final days.

Jenn's strength and health had declined after her last post, and she made the difficult decision to check herself into the hospice house on September 6th. She had already found a perfect adoptive family for her beloved cat, Stewie, and was able to let him go to his new home that afternoon.

At hospice, Jenn was always surrounded by family and friends. Her sunlit room was filled with flowers, crystals, pictures drawn by kids who love her, and towards the end, a sound machine that gave her the sound of the waves at the beach. Outside the window was a garden and a beautiful wind sculpture.

On September 13, a very important item on Jenn's "bucket list" was fulfilled. Her favorite musician, Michael Franti, came to visit her in hospice. He brought along his guitar and one of his band members, and they stayed for over an hour. This private concert of songs Jenn loved also contained much love, sharing of stories, and hugs. She was able to connect with Michael, who is a warm and giving soul, and receive the gift of one of her dreams coming true. Although she had been sleeping a lot by then, she was awake for the entire hour and was thrilled beyond measure.

As Jenn's health continued to decline, she was visited by so many people who love her and care about her. She was wheeled out into the sunshine, had people reading to her, and was sung and played to by musician friends. Her polarity therapist visited her several times and really helped her in the process of letting go.

A group of people gathered in her room on September 22, the Autumnal Equinox, for a loving and very moving ceremony, the purpose of which was to help her let go of her physical body. From then on, family and friends kept vigil with Jenn, and she passed away on the afternoon of September 24th, surrounded by loved ones, as had been her wish.

Jenn did not want a funeral, and instead had planned a private Celebration of Life gathering for family and friends. In lieu of flowers, she asked that people who would like to contribute would choose one of her favorite charities:

Edgebrook Inc.:  Edgebrook, Inc is a non-profit organization which offers "Moving Through Grief, Trauma and Loss" residential workshops in Alfred, Maine.  Make checks out to Edgebrook Inc. and mail donations to P.O. Box 13, Pownal, Maine 04069     http://edgebrook.org/

Island Dolphin Care:  IDC is a not-for-profit organization participants reclaim hope, shed stress and find inspiration through activities centered around dolphin human therapy. Make checks out to IDC: donations can be sent to Deena and Peter at 150 Lorelane Place, Key Largo, Florida 33037    http://www.islanddolphincare.org/

Cancer Community Center:  The CCC supports and promotes the well-being of people living with cancer, their families and their friends.  Make checks out to Cancer Community Center; mail donations to Cancer Community Center, 778 Main St.,South Portland, Maine  04106   http://www.cancercommunitycenter.org

Thank you for reading. Many blessings.

Sunday, September 1, 2013

When does it stop?

Lately I have been going everywhere with my cane and with the warm weather my armband where I have my PICC Line is, shows. So I feel stares coming at me. Sometimes I feel warmth, of genuine caring and curiosity. I can imagine there are many different thoughts going on in peoples' minds. "I wonder what is wrong with her?, She looks so young?, Maybe she's in treatment and will get better?, Maybe she has anorexia and has a feeding tube? Maybe....".etc... etc...

When I feel vulnerable the stares feel like tiny pins coming at me. Not to where it really hurts, more of a slight sting. When the sand scratches your skin on your feet when you force your sandals on without first rubbing the sand off. That kind of pain. I just felt that the other day. I feel it today.

The last few weeks, during Radiation, I've been more vulnerable and therefore opened up to receiving more negative thoughts as well as positive ones.

I am happy to say that the Radiation days are over and the pain in my throat that I needed medicine for is now not needed, thank the goddess! That medicine was icky! lol, but I am grateful it did its job and now I can eat without pain again.

The fatigue is still around and may not leave me. That is nothing new.

I am so tired of talking and writing about how tired I am and I'm sure there are many of you if not all of you are sick and tired of reading about it as well.

I am getting to the point where I need to either take to my bed voluntarily or something maybe might happen to cause that. I'm not saying I would commit suicide, no, but I just feel like the end is nearing. I've said this many times before, I do realize.

How much pity can one take before you can't take it anymore and what does that look like in literal terms? How much can people take around the person who is dying, of forcing the smile or brave face for that loved one, before something happens? There has to be a stopping point right?

Well, I'm asking for that stopping point to be soon. I mean really soon.

My birthday is next month. October.

I used to see my birthday, and actually I still do. Over and over and over again on signs for watches or clocks. I have heard that the majority of people who die, die near their birthday. Within weeks, and not much more than a month. So, I thought last October I would die on my birthday. I'm not sure I can even make it till my birthday this year. You say, only a month? That's nothing? In some scales maybe. For me it seems like a year.

I went to a funeral service a week ago and this man died on his wedding anniversary, almost to the hour they were married. Isn't that amazing? How can one control when they die? To the hour? Is that possible? Or is it some spirit guide helping that to be? There are a lot of peoples' birthdays happening in September and October, of whom I know. I wouldn't want to die on anyones birthday that I knew of, that doesn't seem fair. It would be like robbing that day from them in some way. Like when people have their birthday on Christmas or a twins' birthday. You want to feel special to all that know you on your birthday.

I don't want pity, I don't want my brain to change as it seems to be doing right now, to where I'm a mean person or a person who wants EVERYTHING to be about them. I really don't want people to remember me as being this needy person who cared only for herself and was mean and lashed out at others or whose brain was failing her and she didn't make any sense at the end. At least, can't I have that? I know I didn't win any awards or was a mother or a teacher or someone who has a plaque on a wall somewhere that people will see every day. I don't need those things. I just want to be remembered for being a nice person who just wanted to be loved and to have given love to all people who crossed her path. If I could be remembered for that and for just being a good person, then thats fantastic!

Not pity, not for my brain not working well, not for all the negatives.All the stories like "Oh, I remember when Stuart died, how sad she was and ....Oh I remember when this happened and her family was so angry.."..or this story or that one of the negatives....why do we focus on the negatives?

I'm in pain now.....so i'm going to stop writing.

Look..... another negative.

Hopefully next post will be positive.

Love you all

Namaste

Tuesday, August 27, 2013

After Effects

Hi Ya'll

Well I'm still here, so that's something.

I went to a funeral service the other day. I wasn't able to sit thru the whole service
unfortunately. My back was extremely bad. Sitting on those wooden church benches
and it was hot in the space. Its a nice church and the service was packed with people.

The man who the service was for was loved by so many people. I only knew him for a
short time. I only saw him twice but he made an impact on me. He was one of those
people whom you connect with immediately. The second time we saw one another was last
year when I had been re-diagnosed and he was in his second year with pancreatic cancer.
He made it two years. That is unheard of with that particular cancer. His spirit was something
else. His whole face lit up when he smiled. It's like every part of him smiled. It was genuine
and not a put on face. When I spoke, he really listened. I felt I had his full attention. That is
rare these days I find. People who completely listen to you and not be thinking of what they
want to say next or being distracted by something else.

I wish I could have stayed longer to let his wife and my friend, his step daughter,  know how much I
am sorry for their loss. I wish I could have seen him play his violin.

Things came up for me while I sat there at the church, such as what MY celebration of life party will look like. Not in a church.

I don't belong to any specific religion.

I have told two special people in my life, the things I'd like to add to the party and they will make
sure part of me will be seen and heard there.

Lately the physical stuff is that my pain in my back is increasing. The left side is now hurting. The right side was gone and now seems to be back a bit. Oh well. This is the name of this game. The pain increases and I just deal with it.

I have to get a Rx, second one so far, for a radiation type burn on my throat, esophageal radiation ...something or other, basically my throat is hurting when I swallow, water or eat anything. I thought at first it was heart burn but its not. I'm hoping this second Rx works. The one I tried yesterday just makes me feel drunk and works for a short time on part of my throat, not all of it.

I'm feeling really dopey right now writing this post. I really wanted to write something. It's been a while.

So, the positive things...... I had the most incredible Kirtan experience of my life! My dear friend Susannah and her husband Francesco brought their instruments to this grassy area looking down at the ocean and beach area. Lovely birch trees were all around us. There was only one couple laying down not too far from us, with their Shepard mix dog.  As we left they said that it was beautiful and thank you.

We sang and played music. I tried my best to sing even if it was way off key, it doesn't matter. There is no judgment with those two and that's not what its all about. It is to sing and rejoice life. There was a beautiful breeze and gorgeous clouds in the sky with perfect temperatures. We really could not have asked for a better day.

We sang in rhythm, together and call and response and in rounds. So wonderful. I almost started crying. I imagined that that may be the last time I do that. I wanted to remember every second of that time, to put it in my pocket to pull out whenever I wanted to so I can remember it again and smile.

I also had great food (some of it) from a place called Sillys Restaurant. It is so good. My friend came down to stay the night. We also watched a movie I love. That was all on Saturday.

Yesterday was about setting up electronics. Yuck. But it had to be done. Thanks to my stepdad and Larry!! The morning I got to go with my friend to East End Beach for a little while. Such a beautiful way to start my day.

Today I also went with a good friend to East End Beach after we had gone to the Holy Donut. So so good. ! I was able to eat most of what we ordered. Not just donuts there.

So, I'm in pain but I know there are people out there in worse pain than I am. I am just trying to appreciate the times when I CAN go out and put my feet in the ocean and go somewhere in a car. There may be a day when I can't do that anymore.

I do wish so much that I could just dunk into the water, my whole body. I can't because of my medicine pump and my IV.

So, I try not to think about it. Some days are tougher than others.

O.K. .....that is about it. You have been mostly caught up on my affairs of late.

I hope you all have moments of joy that you will remember forever.

Put it in a pocket and never let it go

Namaste'



Friday, August 16, 2013

Fire and the elements

Hi Everyone

Thank you so much to all of you that comment, it truly makes my heart swell. :)

I saw my Polarity Therapist yesterday. She came to my house since I wasn't able to go to hers.

It was such a gift! She always makes me feel better, not just physically, but spiritually and emotionally.

Now some people out there may not agree with going to anyone else other than doctors who practice Western Medicine and that's totally ok, your choice.

I believe in trying both when needed. I also believe our country doesn't support preventative medicine like I wish it would. Mostly the insurance companies. They are slowly coming around by paying for some massage therapy if they work out of a Physical Therapy office and I've heard some Acupuncture is covered sometimes. So its coming along.

I believe in Polarity Therapy and also Eastern Medicine. The pathways of our bodies are connected in an interesting way. I'm not a Polarity Therapist so I'm not going to teach anyone about it. I just wanted to share my experience.

So, since I am having Radiation beaming into my neck and head area, but is hopefully going to help the pain on my right lower ribcage area, I think is interesting. It has to do with the nerve pathways. Radiation Therapy is fire and heat and all things related to that. So what do you do when there is too much FIRE? You add WATER and sometimes AIR. So my Polarity Therapist worked on opening the pathways to allow more water and air thru my body. I'm not explaining it well, but that is the only way I can try to. I've noticed that I've been angry and irritable and impatient and emotional.....very weepy. At the RADS appt I saw the doctor about a new pain in the middle of my back which could be another compound fraction of my spine and I started to cry. There is nothing they can do for that.

So, I knew that I had too much fire due to radiation and that my stomach issues are related even though the Radiologist says otherwise. My Polarity Therapist says that anything that puts too much fire to the head area, can affect the digestive area and the thighs. So, I'm not crazy in thinking its related. It's just another way of looking at things. From a different point of view.

My horoscope today, via Yasmin Boland, said something about having my own point of view and to stand strong with it even when others don't agree. So, I do stand strong with it because I am feeling it. I can feel what my body is doing and how it relates to what is going on lately.

My mood already feels so much better. I still have 4 more Txs to go, so I have to visualize the ocean and air and ether balancing me out and hopefully that will get me thru the rest of the treatments.

I know the fatigue will last 1-2 weeks after its over, but I am already tired due to having cancer and my weight is down to 105. Not having a lot of weight on you makes it harder to do things and wears one out faster I'm discovering. Things that were so easy to do are now making me have to lay down for a while.

My Polarity Therapist also said to allow people to help me. I'm really trying to do that. Lots of my peeps are busy or are going away on vacations or work related trips. I am visualizing lots of people helping me do things around the house and getting items I need etc....

I think it's also wanting people around me, especially overnight. I feel safer knowing someone is here at night in case something happens.

So, thats all for today. Busy day for me, but I know I can get thru it.

I hope you all have a wonderful Friday and weekend!

Blessings to you all!


Wednesday, August 14, 2013

CAT SCAN and other joyful news

Hi Ya'll

I didn't even go back to see when I wrote again and what I said.....I'm winging it and just
writing what I feel like now.

I got out of the hospital and came home to a very grateful Maine Coon Cat who missed me very
much, and me him as well. I was so happy to be back in my tree house once more. It felt so much
better than the hospital where one gets assaulted to every sense. Smells, Textures and greasy door knobs and needles poking and prodding and the food is horrible and doesn't change, the noises are unbearable. All the beeping of machines, including mine. I had a pump machine to put in all the liquid meds into my pick line and when they got low, the machine beeped very loudly. Sometimes at 3 in the morning. The nurses were up partying at 2 in the morning one night. I asked for a xanex to get some sleep and I got major attitude. I couldn't take a shower except there was a shower cap that you put on and you scrub your head while the cap is on. It has some kind of shampoo and conditioner mixture that you scrub into your head and then towel off afterwards. Not good.

So, being home was incredibly important for so many reasons.

The pain was not controlled so I am now doing radiation treatments again.....oh boy! This time the doses are higher than when I had them in 2007, but there is one big difference. I have 10 sessions where in 2007 I had 33 sessions. I am half way there. Today was my 5th. I have been experiencing stomach issues, big time. I'm told it has nothing to do with radiation. Despite the fact that it started 3 days after I started RADS. I am sure being assaulted with radiation has some effect on other parts of my body. You can't convince a Radiologist that. I tried to in 2007 as well. I had some side effect happening and the doctor would not accept that it could be related to the treatments. I was so furious. I know my body and know what is affecting it.

Anyway......The up side about doing the RAD treatments is that hopefully the pain will be gone and the other pain will be manageable. Also what I didn't know right off and the main Radiologist who has my case failed to tell me is that the two tumors they are "attacking" are very close to my spinal nerve in my spinal cord. If the tumors grew any more, they could push against that nerve and cause paralysis to the rest of my body. I found this out from another doctor where I am getting the treatments at. I say treatments, even though I am not being treated with radiation, this is not curing my disease. It is only making it more comfortable for me to continue dying. Also that little fact about the spinal nerve.

I had to get off of Hospice for the 1 1/2 weeks due to Hospice not willing to pay for it, its cost is $10,000.00. Yikes! So, I'm hoping Medicare will pay for it and the part they don't pay for I qualify for Free Care. So, I'm all set. Or so they say. I also almost had my hospital bed taken away from me......red tape......the company is taking my cane, my tray table which has been VERY helpful and my oxygen tanks and equipment. Good thing I don't need the oxygen right now and I have another cane due to a friend buying me one. Then after the 1 1/2 weeks is over, I can have it all back. Luckily my Oncologist wrote a Rx for the bed. I don't know what I'd do, I'd lay on the futon bed but it would be very uncomfortable for me and people couldn't stay over night with me unless they slept on the floor. But it's not an issue thankfully.

I am very grateful for so many things and yet there is still so much to gripe about. I do try to look on the bright side of life.....hey isn't that a song? lol

Sometimes its just a sucky situation.

The RADS is making me tired for sure. I still have 5 more to go, luckily I have Saturday and Sunday off, so maybe my body can rest up a bit before the last 3 txs. I am told that I could have a sore throat for a week or more after I stop tx. I also may have trouble swallowing. Radiation is the gift that keeps on giving.

I AM lucky they saw the tumors pressing on the spinal cord etc... if I hadn't had the pain and hadn't had the CAT Scan, then I could be going about my business and wake up one day unable to move. Not ok. It could still happen. Hopefully not.

When I met with my Oncologist yesterday, with my mom and Soc Worker from Hospice, I tried to keep it together but I ended up crying quite a bit. I asked him a bunch of questions and he showed us the CAT Scan on the computer. Pretty freaky.

Then I asked him how bad off do I need to be until he can sign off on Paliative Sedation. He said that it's up to me, but I know I have to be pretty bad off. I started crying due to the fact that I feel like I'm almost there. It has been a long long year and my family and friends, some of them, possibly could be experiencing Compassion Fatigue. It is a long time to put out love and caring for someone and to prepare yourself for someone to die and they don't.

I can't get away from it and go camping or go traveling or just not communicate with ......well, me.....I live with this every single day. It is getting emotionally very very hard for me to keep looking at the positive parts of this journey. I am still doing it, but it's getting harder. My mom says I'm so brave. I don't feel like that. I also don't want to have to live up to that. I don't want people to expect me to be brave all the time. I want to be able to fall apart too. To be allowed to have crappy crappy horrible disgusting days sometimes. After all this is not a fun time to be had by all. I am dying of a horrible disease, so aren't I allowed to have some bad days?

I really just want to be loved and cared for and not looked at with pity or with fatigue that says to me....."you've lived too long"

That is incredibly hard to hear or to imagine people are thinking. That my loved ones want me to just go. Maybe it's partly due to them not wanting me to suffer, or that they are scared. I am just very vulnerable right now, so that means I'm super sensitive to others' emotions. I"m thinking that I'm turning another corner of where I am getting worse and will soon be sedated more than I am now. It's about Dignity and Grace for me at this time on this journey. I don't want to be angry and mean to people as I've heard people get as they get closer to the end. Even if it IS part of the process. Not for me. I want people to remember me as a person who can show love and be loved and respects people no matter what their story is.

I am rambling now.......lol

I just wanted to show you a small window of what goes on in my mind lately. The fears and issues I"m dealing with. I also have experienced Love and Singing. My friends came over to give me a private Kirtan session recently and that was so healing and wonderful! I also have had reiki from a friend not too long ago and tomorrow my Polarity Goddess is coming over to my house to give me Polarity. I can't wait! I hope she can balance me out a bit. Open up the closed up areas of my body and spirit. My body is being attacked by this radiation that is helping but also is hurting other parts of me. So those parts need some help.

I am very grateful for the community I have around me. It is a bit smaller now than it was in the beginning. Some people have faded into the back ground and some are very busy before Fall gets here. Either traveling or busy with their kids. I still have an amazing core crew of beautiful souls who help me in so many ways.

So, I'll end this post with a thank you for reading and for witnessing my journey.

Blessed Be!

Sunday, August 11, 2013

Back to RADS.....AGAIN!!!!

Yes, it's true. I'm having more radiation therapy. I had to be in the hospital for what I thought
was a pulled muscle that caused me so much pain it was excruciating. I was there for 3 1/2 days and left still dealing with the pain. I was told on one day that I had to go home with this uncontrolled pain and die in bed. I was sobbing uncontrollably. I was not ready to hear that. My mind could not wrap itself around that information. The Oncologist didn't ask if I wanted a family member with me or a nurse or anyone. She drops the bomb on me in not a nice way and leaves the room saying "sorry". I was devastated.

Then the next day she came back to say that maybe radiation would help shrink the tumors that they saw on the CAT Scan the night before. Or I could try a nerve blocker. I don't think I"m going in that direction. They want me to have 10 sessions of RADS. I have had two so far. The weekends there is no treatment. So on Saturday (yesterday) I had horrible digestive issues. Nothing was staying in my body. Not throwing up, thankfully, but coming out the other end. Not fun. I soooo wanted to have some ice cream with my friend who stayed over last night but it just wasnt worth the torture my body would go thru afterwards. I wanted my body to have a break for a while. I'm hoping the reaction to the RADS is over and my body will be acclimated from here on out. I can't afford to lose any more weight. I'm about at 108 or less at 5'7". I lost about 60 pounds since last Summer.

I have been thinking that I have just lived too long and also have been feeling that from some family members and non family members. It's too hard to give out compassion for a year or more I guess. I try to understand it and wish I could take the pain away from others, but I can't.

I am living with this every single day. I can't take a break from it and go camping and forget about it all. Nope. Every day.

This is what I wanted. To die with dignity and not with excruciating pain. So far it was happening until now. I'm feeling optimistic about the RADS working. I'm wondering if I need all 10 sessions.

I know that everyone grieves differently and expresses their fear differently. I'm trying to find acceptance for that. It's hard when I"m exhausted and in so much pain. So I figure if people want to come to me and share love and compassion with me then thats what I'm needing and requesting. Not judgment or telling me what they think I should or should not do. This is MY path, MY journey of dying. The most important journey of my life in this body. If people can't show and share love with me, then hopefully they can process their pain and fear with others.

I have enough to deal with on my own and can't fix anyone else or should I do that. NO.

Everyone hurts and expresses that hurt in their own way. This is my mantra for today.

I love you all out there!!!!!

Love one another please!

Peace

Jenn


Sunday, July 28, 2013

Changes

Good Morning Ya'll

Well I've had an up and down kind of weekend so far.

I felt the urge to write about it.

The pain I'm having on my ribcage has gotten much worse. So I went up on my meds I think it was Friday? So that adds more memory issues and more fatigue until my body gets used to the change.

I have noticed my memory over all, even before the up in medication, has been challenging.

Well, this morning I spoke with someone who I treasure my time with and she told me we have a visit scheduled for this week and on my paper schedule I have nothing written down. So my mind went into overdrive when I was half asleep as well, to try and find the memory of when we decided on this visit. I couldn't put the pieces together of when that was. I can't tell you how upsetting that is to forget something important as a visit with a friend is. It's one thing to forget a name of an actor or a street name. That happens to everyone. But to remember a visit planned? To me that ups the ante of stress in my brain. I am someone who is/was super organized. I would remember the phone call or email or whatever it was that occurred in making that appointment. Not now. Wow! It's like someone took some tweezers and plucked out that memory completely. It's like I want to find the person responsible for causing this. Ahhhh, that's right....CANCER! Fatigue, med increase, stress, feeling beat up at the DMV two days ago because I didn't have my nurses medical license number on the form so she yelled at me over and over until i was shaking uncontrollably and my brother had to step in to help, lots of emotional triggers lately......who knows? It's all connected like a spiders' web to CANCER being in the middle.

I love that I can still schedule my time, MY TIME, still. But lately things have been happening. Not every day and still under the normal of 'people making mistakes and its ok' category. I will be so incredibly sad when scheduling will be in someone elses' hands.

I know it will happen some time. I walk with a cane now. I have a disabled placard to use in anyones car, which is helpful but its still one more thing to show people that I have something going on with me. Something not right. Different.

I wish I could plan on how I will feel each day. What to do.

My brother came up for a short visit. It was great to see him. He wanted to make plans before he came up and I had to tell him, like I have to tell everyone, that I just don't know how I'm going to feel at each visit. I can't make reservations at a restaurant. Most restaurants are too loud for me to go to now. There is a wonderful Tea House that is lovely and usually very quiet. I do get a little tired of having the same small choices of food. The Tea House is mostly for tea but with some yummy pita bread with different options such as olives and tomatoes and hummus, feta cheese or goat cheese with scrumptious spices on them such as cardamon.

I guess, I just wanted to express my sadness for not being able to do certain things as good as I could before and how things are declining once again.

It's a rainy Sunday and I suppose it fits my mood.

Wednesday, July 24, 2013

Statement referring to the last post

Hi Ya'll

I slept on  what I had wrote yesterday and just wanted to make a couple of things clear.

One is that I love all animals and creatures. I have killed a few bugs here and there but honestly I try to bring them outside. An example is that on Monday I received some beautiful calla lilies and on one of them there was a very small and cute little slug hanging on and walking around. I took him down my two flights of stairs and put him on the ground in an area where he'll get to some greenery. So, I would never ever consider killing the seagulls. They are laughing at me as I write this. Loud as ever.

lol

And then the whole redneck comment....it's so hard to know whether a comment like that is going to be met with anger or a personal attack. I hesitated and then decided to use it. I believe that all of us can be pushed to a point of wanting to call someone a name that may be grouped into a stereotype. Like my friend from England used to call me a tree hugger. I embraced that and love the term because I am indeed a tree hugger. I have a picture to prove it. Some people would be offended by that. Now redneck is a bit more harsh than tree hugger in my opinion. So I wanted to apologize to anyone that I may have offended. I don't take it back however because, like I wrote above, I believe we all get pushed to a certain point of impatience and anger that we will name call. I am trying to keep it real here and I certainly wouldn't call anyone that name to their faces. Anywhoo.....I wanted to just clear some of that up in case someone had a problem with those issues.

I'm trying my best to be all Zen and Buddhist and Pagan about my fellow seagulls and maybe I can send some kind of message to them as a whole in a meditation to please move somewhere else, PLEASE?!

Have a fabulous day ya'll!

Tuesday, July 23, 2013

Seagulls will get me first!

Hi Ya'll

Well, you may be wondering about the title of my post today. Today is one of the first days in a while that I could keep my windows open and not have my A/C running. The rain was coming down in sheets this morning so my cat Stewie and I lay in bed listening to the rain. Then when the rain was slowing down, the latest noisy addition to my neighborhood is the dozen or so seagulls that are either being fed or there is something most extraordinary out on the roofs. The last few weeks the gulls have become insane. They screech and yell as they are right now and have been all day. Not a little in the morning and a little in the evening. No. All day!!! I now have my A/C on just to dull the sound. Unfortunately I can still hear them but not as much. I can't be the only person upset with this happening. All the other birds I've loved to listen to are being drowned out by the gulls. I love hearing the mourning doves, cardinals, sparrows and finches, chickadees and many other birds. Now all I hear are the gulls screeching like they have found the best meal ever. Fighting and ......
Can you tell I'm a bit bothered by this? LOL

I know its the full moon but this has been happening for weeks now and it seems to be only getting worse. No one is going to want to spend the night if they have to deal with screeching gulls every night and morning. Or maybe I'm the only person upset by this? I know I'm extra sensitive right now and can get upset over small things but this is not small. My home health aide got to see and hear what I'm talking about today. She said she'd go nuts too. 

I have discovered that for sure I'm more sensitive. I picture my body almost turning inside out in a way. My body is experiencing being a baby like body again. My skin is delicate, it rips easy. I have had more cuts lately from little things that I didn't think would cut me but have. I need to be careful due to so much Ibuprofen I'm on that thins the blood. Lots of bruises. I notice I am not having hot flashes anymore, thats something wonderful! I don't sweat as much. Yay!

While I'm bitching I'll share a funny with ya'll. My friend Tanya and I wanted to go to a small beach  the other day and have some quiet time together. Not be with rowdy folks at the big beaches. We were turned away at one place I love, the parking lot was full. I swear you have to get there at sunrise to get a space. So Tanya knew of another small beach. It was great, very very small, a huge Hummer could maybe cover most of the beach area. The tide was going out so we were hopeful we'd get some more beach area. Most everyone was quiet, sitting in a beach chair reading. Perfect! One couple came onto the beach. The man was a bit annoying. He was smoking a cigg and talking loud and saying hi to everyone whether they wanted to say hi or not. I could tolerate him ok. He was nice enough. We were there maybe an hour, probably less., and there is one family that comes onto the beach with their kids, maybe four kids. Its filled up pretty good, then Tanya and I couldn't believe what was happening. About a dozen more people, including their kids, bombarded the beach area. They had their coolers full of beer and they were screaming at their kids and saying to one another, "you better sober up soon!" What?!! It was so incredibly rude and clueless that these people were doing this. It was like a family of loud kids and drunk adults crashed a symphony performance. No awareness of what is going on around them, or they just don't care. So Tanya and I left. The woman next to us asked if she could have our space and we said of course you can and good luck. I just don't understand the people who feel like they have a right to crash a place and make it theirs. I know this is so un-P.C. but we were saying that we got crashed by a bunch of rednecks. Yes, rude stereotype but it sooooo fit them. Babies being unattended to while the mom is drunk and swearing and you name it. Just too much.

So, on our way back we stopped at the cutest little cupcake trailer set up. Cupcakes on wheels. This mini trailer painted pretty pinks and greens was set up in this parking lot with a small table and two chairs next to it. We each got a cupcake. We could have had ice cream with it but that was too much. I barely finished my cupcake. They were wonderful!!

So, I was thinking about how I want to still be able to do for others and finding it harder to do that. Is it ok that I only receive now? Is it ok to just get food from family and friends when I need it and not have to pay them to do so? Is it ok to receive help doing laundry and not pay the person for doing it? I wish I had the money to pay everyone that does something for me something. A gift card to somewhere nice or some gas money and in some cases I have when I was able to. Right now I'm hurting for money until the beginning of the month so it's hard for me to ask for anything but I am in need. My polarity therapist told me thats one lesson i'm here to learn, is to receive and only receive. That I have given a lot over the course of my lifetime and now its ok to just receive and I have to fully receive, meaning without apologizing or having to give something back in return. I think some things are ok, but mostly to feel what its like to fully receive. Wow! Does anyone else have a hard time with doing that? To fully receive without thinking of a way you can pay that person back? In some small or large way?

I hope that my thank yous and the little things I CAN do is enough for people in my life. I won't be here too much longer, or so I think., thought so .... you get the idea.....who knows when, but it seems like its not much much longer, so is it ok to feel the receiving end of things now? Before I go?

Maybe this sounds selfish? Maybe some people are saying or thinking to themselves that I am using my dying as an excuse to just receive? I wonder about these things. I'd love some feedback on what you all think about giving and receiving. Can you just give and not expect a thank you or anything in return? Isn't it about the giving and not the response?

What I would like to give those gulls out my window, is a big box that will fit all of them in and fly them to the moon! No no no.......I don't mean it. Or maybe I do.

Sunday, July 14, 2013

Feeling Some Freedom

Hi Everyone!

I want to post about my wonderful day on Saturday and update you on what's happenin'.

I had my dear friend Nancy overnight on Friday and we had some time to catch up before
we both crashed a bit early. We were able to get up early in the morning to go to the beach
with our coffees. There was a road race happening where I usually like to go so we picked
a totally different place. I asked Nancy if I could drive. I LOVE driving her car. Its a stick shift
so its so much fun! It's been so long since I've driven. I felt good and wasn't feeling drugged up.
So, I drove for a while and it just felt so so good. The feeling of being independent again. The
windows open with our hair flying and we were laughing. No humidity to keep our windows shut
and have a/c. After a while Nancy drove and as we were crossing a bridge to go to our destination, I just started to cry. I felt the emotions coming up and I could have pushed them down, thinking this is silly to be crying over something like this, but I allowed myself to let the emotions come up. Nancy put her hand on my heart and my hand on hers as I cried. It was like I was "normal" again. Like before the cancer had come back. I was independent again. I was free. I felt so light
and happy and like someone who maybe was incarcerated for a while. I don't know for sure but that's possibly what it felt like. Freedom.

I have been cooped up in my apartment for quite some time due to the immense humidity. I could go for short rides to the store and maybe a cafe'. But not for a long time and always from A/C to A/C. I don't know how people can live like that in the Southern States where you have to have it all the time. I love the dry air and the feeling of my lungs being able to take a full inhalation, well, as full as I can right now. We were at a small beach with no one else around except to see the lighthouse nearby. We found lots of seaglass that was not quite "cooked" yet, so we threw them back into the sea. Nancy continued to do that while I made a sculpture with a stick and bright green seaweed with other objects. It was so much fun. Like playing as a child. I then took lots of photos. It felt so good to take pictures again.

We had to get back fairly soon because we both had places to be or friends to be with next.

I then said goodbye to Nancy and my friend Chrissy came to get me shortly after.

We went to another little beach about 20 mins from here. We too had tried another place and found there to be no parking. We thought we were settling for this small beach area but it actually ended up being the perfect place for me anyway. It was shaded and had hardly anyone around.

Nancy and I also had found a yard sale. I LOVE yard sales. It felt so good to find one. I had missed them so much lately. I found a nice floppy hat to wear. So I wore my floppy hat with Chrissy on this small beach. We had got sandwiches and ate them on the beach while we looked at the mounds of lobster traps floating in the water on a plank of wood. I suppose they need to be protected. People may want to steal them to get their own lobsters? Lots of sail boats to look at as well. A small black lab puppy was there near us. I asked them if I could pet him. Luckily they said yes, I was chomping at the bit to go over there and say hi. His name is Thunder. So sweet. I love getting puppy kisses.

Chrissy went out in the water so I did too. I ended up bringing my lovely rabbit Henry with me whom I take pictures of and make greeting cards out of. He has a music box in him and is to be around 30 years old. So Henry went onto a rock in the water, Chrissy was helping me. She became my assistant. We put Henry on branches of trees and leaves, and rocks. The rock formations and grooves were tremendous. I loved taking pics of them.

When Chrissy and I were almost up to our knees in the water we saw a rusty huge chain that was attached to the ground and then some seaweed was attached to it floating on top of the water. Chrissy grabbed the chain and then we saw at the bottom a good sized crab. He had a small shell on his head, like a hat. We were joking about that, he was sweet. Until another crab came over and crab with hat didn't like this intruder. They started fighting! Chrissy said it was like watching the Titans. So funny but I also didn't feel like getting in their way. I was quickly out of the water. Chrissy stayed and gave me some commentary. LOL.... no way was I going to get pinched by those claws. To be honest, the crab was probably only the size of my hand, not too huge. Still..... :)

I suddenly got pretty tired and Chrissy could tell. She suggested I lay down and rest and she would peruse the beach for goodies to find.

I just listened to the waves and sea life with my eyes closed. So wonderful.

After being recharged a bit, I took more pics of some of what Chrissy had found.

Then it was time for me to go home and really rest.

I didn't want to go home.

I had had a rough few days before Saturday and just wanted this good feeling to last and last and last.

I have the memory and so I can try and tap into that when I'm in my apt this week due to high humidity. I am just so open to experience things that I took for granted before. I am appreciative of so much now.

I also got a cane recently. Yep, a cane. My muscles are weakening a bit in my legs, arms and hands. I get twitching in my hands mostly. I notice now, its harder to walk up my two flights of stairs. So, my nurse ordered a cane. I do have osteoporosis, so it would really suck if I fell and broke a bone or two. I may not heal properly or.....?

So, its black and not so cool looking. My friends have been great, all suggesting ideas of dressing it up. I also hung out with a friend today who bought me another cane that is pretty flash I must say. lol.
It is black with pretty flowers on it. Purple, pink, blue and mauve. It's pretty sturdy. I may use this one first and then go with the hospital one. It is maybe slightly more sturdy. We were talking today, Melissa and I, about getting one for each outfit. I at least have to put some purple on the black one, to match my hair.

So, Bob, the medicine bag, has been really a pain lately. We're not talking at the moment. LOL, no....honestly....it's been a struggle to carry it every where. I just want to throw it across the room sometimes. It is something I can NEVER put down and walk away from except when I take a shower. That is hard. It's like carrying an extra weight with you when you sleep and eat and dress and so forth.

Finding the balance has been tricky when the weather has been so bleak and oppressive. I can find it a bit easier when I can get out and about and get to nature. Nature is a healer of my soul.

So, we have Bob and the cane and some physical issues. Then we have a wonderful day of freedom that re-energized me.

That's my latest update.....

Thank you all so much for reading. I love you and am tremendously grateful for you all and keep the comments coming!

Thursday, July 11, 2013

The Sun Will Come Out....Tomorrow?

It has been a cloudy, rainy, muggy Summer the last few weeks off and on. A couple of decent days in there, but for me it's been hard. The humidity keeps me indoors most days due to not being able to breathe well. Oxygen wouldn't even help too much on days like that, with 96 percent humidity or worse. So, I have been trying to just take it day to day.

It was a really rough day yesterday, emotionally. I did have a dear friend come over in the evening time and listened to my tearful feelings. She read some kids bedtime stories which was so great! I love being read to. My mom and a dear friend have been reading Anne of Green Gables to me off and on. So much fun. The writing of Miss Montgomery is spectacular and so flowery. Lots of words she used I have never heard of. I love using my imagination about Anne who talks about HER imagination all the time and how good hers is. I hope my imagination will kick in a bit better soon. The days are so long and nights even longer. I am struggling right this minute to even type this. My fingers are having trouble with the pressure of the keys or maybe the movements going back and forth? My back is aching from sitting upright in the chair to do the typing. I am determined to blog and I know of at least two people who would transcribe for me if i wanted to record my blogs into my phone. I feel it's hard to do that. The flow of writing happens when I'm typing. It seems to be easier than thinking of what to write. I just start typing and it comes out. So I am curious to see if it would be a lot harder to speak out loud my blog or not. I won't know until I give it a go I suppose.

I had to say goodbye to a dear friend, yesterday, who I will most likely never see again. She lives in Australia. It was a very difficult goodbye for reasons I'm not sure she would want me to type here or not. I will miss her tremendously. She is a woman who has had her hard hard times but also a woman who I have always seen as being very independent and strong. Doesn't put up with anyones' crap and yet can snuggle up to her kitty cats and has the best smile around. I didn't want to let go of her. Her husband was with her as well, lovely man. I'm so glad I got to see him as well.

Letting go is something I am becoming a champion of. Today I had a cane delivered to me. I could choose from black or black. One was a bit old lady-ish and the other is more modern but didn't seem as sturdy. It folded up, so that was appealing as well, but if it means being more comfortable walking versus looking good then I've always been one for safety. Well, not always. lol....

Too many seemingly small losses to grieve over lately. It seems like almost every day there is some little thing I am no longer able to do.

Yes, I"m on my pity pot today and I think one is allowed to be on it once in a while.

My mom likes to say "Old age ain't for sissys'" and when she said it the other day I said immediately after "Cancer ain't for sissys' either".

Every day I feel the cancer tightening around my ribcage and upper back. My leg and arm muscles and chest. I look in the mirror naked and don't see myself much anymore. I'm disappearing before my eyes. Not fast but subtly. I had to go down in pant size again. It's getting expensive to keep buying new pants. I just bought two pairs of shorts this time. That makes me sad. It's not normal to be size four in my body. I don't know what I weigh due to not owning a scale. Hate them.

I don't think I'm quite at the anorexic looking stage yet, not far off.

I am so grateful for so much even today. It is just a bad day and I will see the sun shine again and be more cheerful again I'm sure.

As a dear person I know whose wife died of cancer used to say, (both of them said it.....)
CANCER FUCKING SUCKS!!!

He and his wife are not the kind of people by looking at them, would you ever expect them to say that, so it cracked me up even more so. She was such a dear person that I got to know near the end of her life, thru my mom. Cancer being the connection between us.

Today I realized that two people are in my life a lot stronger than I think would have normally  happened, but are because of the cancer coming back. So I know that I'm lucky in so many ways and
am grateful for so many wonderful people in my life who support me. It is still a very lonesome place to be and now that I'm coming up to a year since I started to get the symptoms of the cancer coming back and in August I was officially re-diagnosed, I am really ready to go. I still can't believe I'm still here. Maybe there is a reason for it? Sometimes I feel I'm being punished for something. I don't think it works that way. Whatever "it" is.

Ah well....off to bed and I hope to wake to sunshine and birds tweeting out my window ledge.

Good night all!

Monday, July 8, 2013

Nerves

Hi Ya'll

It's been a while since I typed something out here.

I'm finding it a bit hard to type or write lately. Physically. I believe it's due
to the pain medication I'm on. Perhaps a little neuropathy. I experienced that during
my chemo days. My muscles aren't functioning as well as they used to. I get twitches
that I know are from the med. Now my legs are feeling weak, not working as strong.

I guess that's to be expected when one is dying. Loss of function. It seems so subtle lately until
it's not. I may have to get a cane so I don't fall one day because I waited too long to get one.
I have some dignity issues coming up that is preventing me to do some things that would most
likely make life a bit better. I am a bit stubborn, as my mom is quick to mention. :)

So, I will post more when I have a bit more time but wanted to say Hi and that I'm still kickin' around
here in muggy old Portland.

I'm so grateful for my A/C!!

Love and Blessings to you all!

Friday, June 28, 2013

BOB

Hi Ya'll

So, I'll start with the nitty gritty stuff and physical issues and then end on a funny note..

First of all, things are changing once again. The pain is increasing every day. I had to have my pain med increased twice in one week. My fatigue is getting worse and worse. My memory is an issue more than usual. Today I was on the phone with a dear friend and she's driving to work. She first went to a convenient store, then called me back, then she was in line at D&D's for coffee, as I was telling her some things that have been going on lately with me. She had to say, just a sec to me three times, to one, give her order, two, to find her money to pay, and three to get her order, oh and four to get upset about how long the line was there and why did she bother going there today. So there were lots of references to being in line for coffee. I had finished my story and was thinking she had just left the store or something I guess, because I asked her if she was at the coffee shop yet. Then it hit me right away at the same time that she said, no I am at work now. I did realize my mistake but not till after I asked the question. It was so clear in my mind that she had not gone to get coffee yet. I never get that off track with whats going on. It may seem little but to me it was a huge change that happened. I started crying and crying and am so upset that these things are happening. It happened with my aunt and uncle two days ago? not sure of that either.....I tried to multi task and be the go-between person and make decisions for others and I got way too overwhelmed and couldn't do it. I had to cancel plans I had made because I had hit my "wall". All plans were canceled for the day. No nap was going to regenerate me. Naps don't do that anymore after I've hit my wall. I have been having lots of twitches and some neuropathy in my legs. My breathing is worse, mostly due to the humidity.

I know I'm sounding frantic....it's because that's how I feel inside. Frantic that things are going downhill fast. Maybe that's ok? Maybe thats what is supposed to happen. I've asked for this. I worry because so many of my family and friends are so very busy and I'm scared I'll be forgotten and be a huge burden.

It's all so unknown and scary and today is most likely the last time I'll see my aunt and uncle, they leave on their plane tomorrow morning back to SC. I said that last time they were here but I feel this time it really is true. How does one say goodbye forever? I just don't think you can really. Not at my stage. I have to just be here now and forever goodbyes don't fit how i'm feeling today, right now. It's still not easy to think of things in that way and to NOT think.....this is the last time forever. ........etc......

So, ....the funny part, at least I think it's funny.

So as some of you know, my dear friend Nancy named my medication pump "Bob" and ever since then everyone who knows that, talks about Bob like he's real. How is Bob today? I found another purse to hold Bob. My nurse says that I may receive a new Bob today, or as I said to her...Bob 2 or 3, I think we're on Bob number 3 now. Soon we'll have little outfits to be made for Bob. Get a wig for him. The scenarios go on and on. We laughed so hard about it after my tears had dried. I wanted to end our conversation on a happy note. The same way I want to end the blog today.......

Keeping it Real

Blessings to you all !

Tuesday, June 25, 2013

Duck Boat and Acceptance

Wow has it been HUMID here in the Northeast!! 90's today and humid. That is not the best recipe for me and my lungs.

I went on whats called the Duck Boat with my mom, aunt and uncle. I learned some things about Portland that I didn't know about. There was a handsome guide so that was nice on my eyes. hee hee hee. I even dressed up with a new mini ruffly skirt. Kept me cool in the heat. The Duck Boat spends about a half hour on land and a half hour in the water.

I had about 45 mins after I got home after we all had some lunch before another friend came by to visit.

I have A/C, granted its not the best one but its not horrible and it was free last year, so i'm sooooo grateful for it. So, even with the A/C my breathing is not good. I find that when I talk fast or a lot that I am suddenly out of breath. I at one point today, with my friend, thought I may hyperventilate.

I wish I could lay down now and sleep for a while, but I have my step sister coming over for a bit to visit. She will understand me not being able to talk a lot. I don't get a lot of chances to see her so I grab the time when I can get it.

It's just so frustrating not being able to take a nap, feel regenerated and go out again to do the next activity. Nope, I'm done. I could have one or two people over here for an hour or two to chat or listen to a podcast or maybe watch a movie but that's about the extent of it.

When relatives visited in the past, I would see them for breakfast, we might go for a walk somewhere after, or go shopping a bit, then maybe a rest, then out to dinner somewhere fun.

Well, not for me anymore.

I know I'm whining......It's my blog, I'm allowed to , so there! lol

I watched "my" film again with my friend who hadn't seen it yet. So that makes the 4th time I'd seen it. I got a little teary eyed when I was crying in the film saying pretty much what I am now writing about. About how the fatigue is so much more and I can't do what I used to be able to do. My aunt and uncle are only staying for four full days. I want to do as much as possible with them but my body says NO! It just pisses me off. Makes me want to crawl into bed and not get out.

I am so grateful for SO many things I still have in my life and for so many things I still CAN do now but sometimes I still get pissed off. Acceptance is a bitch, let me tell ya.

Sigh.......


Wednesday, June 19, 2013

Trouble Signing In?

I hear that some people are not able to sign onto my blog. I finally found a Google place that may or may not be the correct area to receive help with this issue. They do not make it easy to ask for help.I sent my request to someone out there. Not sure if it will be received or not.

I am not a tech-y person, so if there is anyone out there that has an idea on how to fix this, could you please let me know? Thank you so so much!!

Frustrating!!! I want everyone who wants to view my blog, and who is taking the time to do so, be able to view it!

GRRRRR!

Breathe jenn.....lol

Have a beautiful day everyone!

xo

Saturday, June 15, 2013

Animals know when you are being REAL

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Hi ya'll

I woke up today thinking about someone whom I am having a hard time communicating with and decided for at least right now I cannot be in a relationship with this person in any shape or form. It is unhealthy for my body and spirit.

I was with my dear step sister in law…..my sister….:) and we got to hang out for a little bit. (Time that went way too fast.) Then I went to my friend Vickie’s house, about 20 minutes away, where she has three horses. I love being around her horses. They are such wonderful beings. I feel grounded to be with them. Vickie is starting a wonderful therapeutic program with some other individuals who are of the same mind and wanting to help people thru horses and their guidance.

I wasn’t sure what to expect and was a bit nervous at first but loved being with the horses. First another woman and I were brushing one of the horses named Java. He seemed to be so happy about that. Having two ladies brush him at the same time, it was like he was a Prince. I noticed the smell and warmth that the horse had. Very comforting with all the senses, except not the taste. That would be pushing it a bit far I think. LOL. Although a few horse flies wanted to fly into my mouth, luckily they didn’t succeed.

Then we, this other woman and I, picked a horse we wanted to work with. I picked Oscar. He is a beautiful tan horse with a white mane that has a black stripe down the center. From when I first met Oscar maybe a year ago? I loved being near him.

Each of us got two people to work with as well. I went to Oscar and got the rope to guide him to the shade and I wasn’t sure what to do or what to say or ? I knew what emotions were coming up for me but thought, …no, I don’t need to go there, It’s something I can work on later when I get home. But as soon as I tried to push that thought away and go somewhere else in my mind and heart, Oscar went away from me. He wanted me to be REAL. Here I am telling people to Keep It Real and I don’t go there. So didn’t I feel like a hypocrite? LOL

I decided to go back and sit in the chair and I started to cry and cry. Suddenly Oscar came over and was so strong. I won’t get into everything I said and how Oscar acted but one thing I won’t forget is that this horse licked my tears off of my face. I swear to the Goddess! I was pouring out tears and as soon as my right eye poured out some tears, he had his mouth on my cheek and I felt his tongue lick my tears off my face. He was comforting me but also I felt he wanted me to be strong. To sit with my strength of making the correct decisions for me right now. I have a right to have loving and supportive people around me while I die and I deserve to say no to behaviors that are filled with anger and judgment towards me. I don’t know how much time I have left. I deserve to live and die how I choose and be around people I choose to be around.

I have been living for other people for so long and taking care of their emotions and needs and not taking care of mine. I think its about time I did that don’t you think? If ever there was a time.

I know that my passing is going to be messy and I’m not going to heal every relationship before I go. I do feel like I’ve tried so hard to be authentic with people and try my best to love and understand where someone is coming from. I can’t force people to act a certain way or ask something from someone that they can’t give. But I CAN put up healthy boundaries and not allow myself to be treated unfairly.

My family and friends who understand this are so supportive of me and my path. I am so lucky and so grateful to have a loving and supportive community around me. I am also thankful for the healing power of animals, especially to Oscar, a Fjord whom was so sweet and supportive today and allowed me to cry on his neck and stood strong for me when I couldn’t. While standing out of the shade and back in the sun, I silently thanked him and he walked back to his herd of horses, his family.

Thursday, June 13, 2013

G.L.A.D.

Hi ya'll

I keep telling my local peeps that I will blog today, and I don't, then I say the next day, yes, i'll
blog today, and I don't.

I think the reason I haven't been posting lately is that it's getting harder to write out emails and
my body is so exhausted lately.

The worst part of this journey lately is the fatigue. By the time it gets to be around this time, which is almost 7pm, I usually can't imagine doing anything at all.

Lately it is all day that I feel this way. Fatigue. It is like no other kind of tired that I can explain
to you all and you'll get it, unless you have had cancer and are experiencing the cancer fatigue and
then the dying of cancer fatigue. I get pissed off that I am so tired and can't go one more hour with
my family who are visiting for two days. I HAVE to go to sleep or at least lay down and have complete silence. My body and mind and spirit demands it.

So, I thought I would start doing something that my dear Sister aka Sista Love suggested I do when I'm too tired to write out a long update.

She taught her daughter this when she had to do a daily journal.

G.L.A.D.

G for what I am grateful for today or in general..... today I am grateful for my Sista Love and for the sun that showed itself for a couple of hours this morning where I got to walk the beach with my mom.

L for something I learned today or in general......today I learned that Labs can smell your mouth and know what you had to eat hours before and thats mostly why they want to "kiss"you, to smell all the wonderful (icky) smells of your mouth. I learned that from the therapy dogs' owner today on our visit.

A for something I accomplished today or in general.....I was able to upload some pictures to my computer , yep that's about it other than the basic stuff.

D for something that delighted me today or in general.....It delighted me to rub Sox the dogs' belly and hear his grunting sound which means he's happy, to see him roll and roll in the grass.

So, thats about it for now......other than the fatigue and some other pain, I am getting along o.k.

Emotionally not feeling too swell but its not critical. I cried last night during a romantic love scene where the man leaves on a train and the woman is running after it crying. I usually never cry like that, but last night it got to me.

I will (most likely, pretty much in the bag) never be in another romantic relationship again. Sometimes that fact just hits me in the gut. Sometimes I just look forward to the day I get to see
my boyfriend who died, on the other side, some day soon.

Maybe you all can try the G.L.A.D. recipe and see what comes up for you?

Thanks Sista Love, I love you to the moon and back again!
xoxo

Monday, June 3, 2013

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, June 2, 2013

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.




Tuesday, May 21, 2013

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








Friday, May 17, 2013

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

Sunday, May 12, 2013

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!