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

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

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

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 i'm going to stop writing.

Look..... another negative.

Hopefully next post will be positive.

Love you all


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


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 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

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!



Sunday, July 28, 2013


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.