Obstacle Course

I’m feeling like I need more sleep but I’m fighting for more time during the day. Its like my days are shrinking without my approval. I have to limit my visits because I don’t have enough strength to get thru more than that now. I’m becoming more and more irritable and needy. Snapping at people I love. It’s the unfairness of it all. I compare how other people get to spend their day and I’m not able to. The comparisons.

I’m afraid that If I ‘give in’ and sleep more then I’ll be forgotten, disappear.

Some people in my life are upset because they can’t see me when they want to see me. I have limited energy and time and its hard to get that across.  I don’t want people to take it personally when I have to book a visit with them a week from now. Its just how it has to work presently. I’m doing the best I can to balance out MY needs and others as well. It’s a dance that I’m trying to choreograph and soon others will take that position from me. For now its my job, with some help from a great website that helps families and people who are in need like myself. Its called eHope.nu. I highly recommend it.

I wonder if/when I become bed bound that people will understand more about my limited amount of time to see them and to also talk on the phone or email/text? It ALL takes so much energy from me. I wish it weren’t the case but it is my reality now.

I still have things to do, I don’t want to take to my bed quite yet.

I went to the ocean with a friend the other day and I realize how important it is for me to be there and to be in nature period. To do things out there in the world while I can is so important to me now. I also want to go see some animals I just love so much. There is a local place that raises animals for many reasons, one being for beef and for turkey dinners but for other reasons too. I especially love the goats. LOVE GOATS!

They are a wonderful place, Wolfs Neck Farm, and I encourage you all to search out local places in your area and see if you can buy locally, your beef/chicken/eggs/turkeys/milk etc… Buying local is so important now more than ever. When you buy local, you keep one more truck off the road that travels across the country using gas and polluting. Buying local you support your local community and the money you give them stays in the local area. It really is a WIN WIN. Plus, I’m hoping that your local farms don’t feed antibiotics and growth hormones to their animals. I know I personally don’t want to ingest those things when I’m eating food. I have enough meds in me and don’t need to add more. Growth hormones could be one reason why breast cancer and other cancers are climbing high. Who knows?

Ok, enough lecturing for today. LOL

My point is that my body craves being near the ocean and trees and the natural world that I sometimes forget is out there and how nourishing it is. Hug a tree and you’ll know what I mean. No, really …hug a tree, close your eyes and try and feel the energy of the tree. Its incredible. I know it looks funny and all, but if you can say….to hell with what others think, and really feel the energy. I bet you you’ll feel better after wards.

I’m a tree hugger and proud of it! J

I was writing the other night about how my circle of support is getting smaller and smaller and that’s how hospice said it would get. Its still hard to accept. I need to realize that some people can’t handle being around someone who is dying. I am also realizing that I can not make anyone understand how things have to be now and how I have to spread out my visits. Also how I can’t always do things that people are comfortable doing. Being busy and avoiding the elephant in the room. Some people want to just go out and see a movie, or get lunch or do do do…..if I were to ask them to just sit with me and talk, I don’t think that could be possible.

I am trying to remember when I was on the other side of death, meaning when I was grieving for someone I love who was dying. I was in that spot. I wasn’t as close to some people at the time but became closer due to cancer and having something in common to talk about. I still got nervous and still didn’t know what to say. It IS a hard place to be. What does one say?

Well, what I want to tell people, is that there really isn’t anything wrong to say. I would caution saying anything that comes across as advice on how to fix the cancer or how to feel better or eat better. I know all of those things believe me. I would say to just treat me like you always have and there will be moments of “oh shoot, I wish I hadn’t said that”, and that’s ok, really it is. I will probably laugh and we can laugh together at it all. We are only human and humans make mistakes all the time. I’d rather someone make a mistake or seemingly say something wrong….than to avoid me all together.

I was also thinking the other day that maybe the reason why the “circle” gets smaller as I get closer to the “other side”, is because its so so difficult to imagine saying goodbye to ANYONE in my life. I’ve already had to say goodbye to a couple of people who just cant handle this, for their personal reasons. I still love them and always will, but I’m not going to try and convince them to keep seeing me the way I need them to see me.

I decided that I have to put my energies into seeing people who really WANT to see me and who are willing to wait a week to see me on my terms.

Believe me, I wish SO much that I could go out to dinner again, go see an evening movie, go see a band, go to kirtan at night. It kills me to not be able to do those things. Ive had to come to some acceptance that night time is not really a time for visiting anymore. Sad but true. Another thing for me to grieve.

I get reminded of how different some people think about my situation as I’ll call it…..

I get reminded of my decision way back in the Fall and how I’ve moved on and others have not. I saw a friend whom I hadn’t seen since before Christmas. They couldn’t believe that I wasn’t seeing a doctor anymore and not getting scans or MRI’s or whatever anymore. I had told this person my decision way back in the Fall and I know it was hard to take for this person but I was taken aback that they didn’t remember that that was my decision and to ask me AGAIN and put that judgment on me with disbelief? WOW!! That was a hard one to hear. I wanted to say….”Where have you been? I’ve so moved on from there!”. I guess they haven’t? We all have our ideas of what one “should” do at the end of our lives. I just didn’t appreciate the overwhelming fact that this person does NOT approve of my decision. I just quickly moved on to another subject. Made it pretty clear I wasn’t going to go down that road again, I’m so tired of explaining my decision. So tired.

That conversation made me check in with myself and see if I still feel ok with my decision and it was a resounding YES! YES! YES! No doubts whatsoever. Neither choice presented to me was going to be easy. I DO know I made the right decision for ME. End of explaining it to anyone. DONE!

Recently I’ve discovered that drinking water or any liquid that is the same “thickness” as water, is getting difficult at times, to swallow. I thought maybe it was just me with some neurotic things happening, but apparently it is quite common at the end of a persons life. It becomes harder to swallow due to the muscle dying or atrophying? Its hard to explain or to really know for sure….but that’s the gist I got from my hospice nurse. So in the near future I may have to get some kind of thickener for my water so I can take my pills and keep hydrating. I don’t think I want to discuss what comes after that point. Lets wait till that time comes to get into all that.

One of my hospice team workers said that its pretty common for people in my situation to start drinking heavily or start doing drugs a LOT. I can see the appeal sometimes. When the anxiety and frustration kicks in or the pain is too much or the emotional roller coaster is on high speed…..sure, I would LOVE to just check out. And I’m pretty sure I will do that in one way or another when it all becomes too overwhelming and difficult to manage. For now I’d like to be as present as I can for as long as I can. Not sure how long that is but that’s the idea.

One insecurity came up the other day when I was being “difficult” and needy. I thought that maybe I should start taking more and more meds or start getting stoned on whatever vice I have to do so, so that my family and friends who have difficulty with my irritable side will have an easier time dealing with me? Why not? I’d be quieter anyway right? LOL, …oh this is such a journey like no other journey….wow!

I believe there are countless ways of doing things, countless ways of experiencing life, countless ways of learning and growing and dying.

I am so very grateful for all the love and support I DO have around me. I am very blessed. It may not seem like it at times when I’m complaining or processing as I like to put it, but really…I am so lucky in so many ways. I smile every day at my cat and my plants that seem really happy and to all that I am able to do. I hope I thank my support peeps enough. They are priceless to me.

There is still so much good quality of life here for me to experience. I’m not ready to go yet, not even close. I’m just having some road blocks to maneuver and some bumps to hop over. But I’m still going forward. Even if it may seem like I’m going in a zig zag sorta way.

Love one another

Long Days

I'm finding my days are getting shorter but seem to be longer....I guess I mean that by 5pm I'm ready for bed but I have to stay up to take my meds and also so I won't wake up at 3am.

I went to sleep the other night at 8pm! I haven't been to sleep that early in years, ...or maybe when I was sick with a cold or flu, it's been a long time anyway.

I had an interesting day today. Mostly good and also just hard cuz it was emotional.

I woke up feeling so melancholy and couldn't figure out why. Was it because I ate too much sugar last night? Was it because I cut back on one of my pain meds and its affecting my mood too? ( i cut back to see if my mood would be better, i didn't ease into the dosage).I realized that it could be anything really. I was crying before I knew it. I almost canceled seeing a good friend of mine because I didn't want to burden her with my stuff and be overwhelming. I decided to take the chance and just see her and see if I could visit her animals or go to the ocean. We decided on the ocean. It was COLD out! But I got to cry and vent my stuff to her and feel like she really listened. She didn't judge and allowed me to slobber away. Then I wrapped myself up with a hat with ears and scarf and monster puppet gloves and went to the ocean. It felt good to take some pics and soak in the ocean air. Even though it was only about 10 degrees?, I am so glad we did that. You know its cold when part of the ocean near the sand is frozen. Salt water doesn't freeze that easily. The air has to be frigid!

I also took some video of the ocean with all the relaxing sounds of the waves coming gently to shore. I figure I could play that to relax sometime when I need to.

I then a while after my friend left I saw my new home health aide from hospice. She is really nice and helpful. She did some dishes and helped me water the plants. It was a little hard knowing she's there to help me and sometime, if I wanted to, I could get help with a shower or she can shampoo my hair. I don't want to look at that day right now. I would rather not go there quite yet.

Shortly after she left, I was on the phone with my nurse crying all over the place again. Then my friend Larry came over to give me an astrology reading and to catch up. Its been a while since we've visited. Poor Larry is sick though. He was nice enough to wear a mask just to be careful since my immune system isn't all that strong right now. Great reading and so nice to forget about the issues of mine and focus on someone else or at least not talk about my vitals or the cancer and all the related subjects. Sure it comes up but it isn't the whole focus.

I'm pretty tired from releasing and visiting but it was worth it. I hope I can wake up tomorrow and feel lighter and more balanced emotionally.

Feels like bedtime but its only 7:30....  :-/

Night ya'll

Melancholy Day

Woke up feeling really really blue.....

Not sure why....

The new egg crate padding has some kind of weird chemical on it, so I inhaled it all night, maybe thats it? Its now airing out in my back bedroom.

I had a pedicure yesterday and felt guilty about it somehow. Like there are other ways to spend my little money I have, but it was something a friend and I were planning on doing for a while, so I did it.

I look at my life in practical terms and it is so depressing. I was alone last night, most nights I am, and I just looked around at what I was doing or not doing and what my little world LOOKS like and it was just so sad. I wonder why I am here still? To sit on my new hospital bed and take pills to keep the waves of crippling pain away and write on my blog?

Sometimes I just think I should just go and let my family and friends start grieving. Being here in the way I'm here is uncomfortable for many people, including myself. Some people won't be near me because its just too much for them. I don't understand that, but on some level I DO.

If those people that feel uncomfortable, were going thru what I am going thru, wouldn't they want support from friends and family too? I just figure its THEIR journey and not mine. I can't make anyone want to be around me or talk with me about the cancer.

The woman who gave my friend and I pedis yesterday was very chatty. Too chatty for my taste. She asked what I did for work, then asked what meds I was on.....non of your business is what I wanted to tell her. Her face and energy changed when finally my answers weren't enough for her and I had to tell her I had metastatic breast cancer. She got all silent and looked down. Then proceeded to ask more questions. When did I get diagnosed and so on and so forth.

I just want to have a day where no one knows whats going on with me and I don't have to answer those uncomfortable questions and make others feel something dark. If someone were to film us thru a window with no sound.....you would see smiles and laughter and then a darkness when she finds out and then more uncomfortable movements and actions.

Some days I want to just put the cancer badge on the shelf and have a day off.

Day of filming

WOW! What a day today was! I am exhausted and probably won't write too much but wanted to just say a couple of words.  The two film makers Sharyn and Kevin showed up at my apt around 10am and we got started shooting probably around 10:30-ish, around 1:15pm we broke for lunch for about 45 mins, where I mostly shut my eyes to charge up my batteries.  Then around 2:30 we shot again until 4:00. That was a whole lotta talkin' on my part, not used to that lately anyway. I hope they got what they wanted and that it came across ok. Lots of questions asked and my responses took off in lots of directions.  Stewie got to be in the film too. He was such a ham!  They may not come back at all to interview me, but Kevin will come back to do some quiet shooting of my place and maybe scan some pictures, that kind of thing. So interesting, the whole process.  I felt a bit of pressure to get it ALL out, what I wanted to say and to hopefully say things with clarity and understanding. I will trust that I said what needed to be said and I know that Sharyns' beautiful film making magic will result in a beautiful 15 minute film. I hope that someone out there will find some inspiration from or help from the film, or maybe it will just be thought provoking? Who knows? It just felt like, to me, that something of my story/journey gets out there in some way.  More later, this girl needs to stop writing/chatting and rest. Peace and Love and Dark Chocolate Kisses to you all! jenn

One More Time

My horoscope today said something along the lines of emotions being high and to watch out.....

Yep....emotions have been high, low and all over the place the last few days.

The pain has dramatically increased. With the pain comes nausea and exhaustion. The emotional
part is also very big. If I am in lots of pain I tend to either hibernate and talk to no one, or if I have to get out and about, I can be a real pain to deal with. I am crabby and needy and impatient. Then overly apologetic.

So, I can't write too much now, the meds I'm on are making me so tired so its hard to focus.

The pain was extremely bad and now the Hospice team are working on getting things leveled out again. So that means new stronger meds and side effects. JOY! ....not!

I've been feeling like I'm really running out of time and so the fear kicks in and I go into panic mode. I want to see my nieces and nephews and all my family NOW! I fear that soon I won't be able to leave my house. This week proved to me that it looks like its happening soon, at least part of the indoor idea.

Emotional morning talking with my wonderful hospice nurse who listened to my crying and babbling about how getting a hospital bed is emotionally HUGE! It's the next step to death for me. Does this mean I'll be bed bound soon? Does this mean I'll be stuck in my apartment 24/ 7 now?

She reassured me that having the bed does not mean all of those things but that my cancer is progressing. I'm having the twin sized hospital bed delivered on Friday. My friends Matt and Brent are coming over to take my bed and box spring away to recycle. My current futon/couch that I've been sleeping on in the living room is going to go into the back bedroom for a bed for guests. Hospital bed will be in the living room. I want to get some bean bag chairs/seats and maybe a nice small recliner for me to sit in when I dont' want to be in the bed. I hope I can find a purple bean bag chair/seat. :)

It will be an emotional day I am sure.

Part of me says...ok, i'm ready to go now, die, ......The other (bigger) part says HOLD ON! NOT READY YET!

There is still things to take care of. I haven't even figured out what poem I want read at my Celebration of Life Party, and what about making sure all the phone numbers of who to call is printed up? I want to sit in my sisters' outside hot tub for one time. I want to see the lights up at Deering Oaks Park one more time before they take the lights down for the season. I want to go to the ocean and put my feet in the water one more time. One more time..................

Then there is the lack of communication on my part. I have been irritable and cranky, due to lots of pain. Also feeling needy and wanting my best friend here with me. Everyone has a life and is busy. So maybe I should just accept that and go on with my day. Well, its hard to do that. If there is one time to feel selfish and be justified in doing so, isn't this the time? Is it really selfish of me to want to see my close friends and family more often? Soon I'll be NO MORE. At least not in this body. So there are no more chances to make fun memories, no more chances to have a slumber party and watch funny movies and laugh our butts off. No more chances to go on a road trip and play fun music to sing aloud to. The list goes on and on.

I am at the point where I need to just rest and rest and rest.

I'm not communicating well apparently and I may have offended people, hurt their feelings, put pressure on someone, I don't know. People are not communicating with me about it. I have to trust that people will come to me if they are upset with something I've done to hurt their feelings. I just don't have the energy in me to do any kind of guess work or play games.

I just don't.

I'm scared.
Really scared.....

I am also really grateful for so many wonderful people in my life. Grateful for so many things. The beautiful snow that fell from the sky today. The mourning doves (pictured below) that come to my window every day to eat some seed I leave for them. They sat there most of the day, with the snow coming down around them. They are all puffed up to keep warm and dry.

I'm grateful for the amazing Hospice crew that I get the pleasure of interacting with.

So many things to be grateful for.

I'm also pissed off! I hate cancer. I hate violence and war. I hate lying. I hate abuse of children and people and animals.

I am human.

I have lots of emotions. I'm not going to be ON all the time. I have my ups and downs like everyone else does. If you don't have downs and only UP's? I would seriously think something is wrong with you. That's not being human. I don't believe so anyway.

Will I be remembered when I die? Really remembered? For what exactly? For having cancer? For being a photographer? For .....? not sure....does it matter?  don't know.....

Today is today and I suppose that's all that matters right now.

I am HERE today

Film Update

Ok, I must be in a "blogging-type-of-mood" today, since this is the THIRD post I posted this morning.

I realized I haven't updated you all on what's happening with the documentary film.

Well, some disappointing news....the first film makers told me they are backing out of the film. Not making it anymore. I won't get into all the reasons why and so forth.....I'm not here to bash anyones' reputation or gossip etc....

I will say for me that it was a bit like a rug being pulled out from under me. I opened up myself to my inner feelings and had a LOT of hopes for the film to continue. It seems we had different visions for the film.

Lessons learned.

But......

All is not lost.

The other film maker I had mentioned meeting with has discussed with me the option of doing a shorter film. Maybe even a 15 minute film. More if the footage needs to be out there. We'll assess as things happen. We are going to meet soon to start with some interviews (filmed) and go from there.

So, I feel like I learned a lot about what I want and don't want for MY film and to also trust the film maker and let go of some of the control as well. There is a balance to be found that I'm sure we'll all get to regarding the film.

I feel strongly that the film needs to get out there in the world somehow and someway. I will work on trusting that it will work out the way it is supposed to.

Letting go of the doves and trust they find their destination.

I will update about the film as things happen.

Thank you all SO very much for reading my blog and if you can post a comment from time to time I would love to hear from you all too and what you think. Even if you do not agree with me, your point of view is important to me.

Peace and Love

Sharing

I wanted to also post today about two things...

I had a WONDERFUL reiki session with my friends Starcat and Quester. So healing!!

Starcat has a book out that I wanted to share with you all.

It is titled "Starcat's Corner, Essays on Pagan Living"

She is a fantastic writer and I recommend you check it out! Congrats to Starcat for
having a dream come true, being published, yay!!!

To order her book go to

www.moon-books.net and go to the ordering section.

Blessed Be Ya'll!

xo