Raymond Charles Barker - I Love You

Actually, I love the book he wrote and him for doing so. The Power of Decision. This is the first book in years I didn't just nod "yes, yes, thanks for the reminder". It has really charged me up and every page is just soaked with wisdom. There is some meaty, juicy stuff to dig into here and I am learning deeply. Instead of feeling shaky on what I felt to be true, he is is just solidifying and taking it DEEPER. It isn't written like these self help, watered down safe versions. He goes for it.

People in the waiting room at chemo and I get into discussions. I always find it funny, when I am struggling with a fear trying to sink it's teeth in and take me down like a zebra that straggled from the herd. Usually, on those days, I have someone, usually new, come to me saying how great I look, how vibrant I appear, and to hear I have (gasp) Stage IV and doing this for almost 2 years now....how can I be so dang positive?! So radiant. I always say "Today, at this moment I am happy, (or even not, I feel so tired, afraid) but I have days where I do let fear get the best of me but I don't fear fear. I just let it really wash through and don't struggle, because I trust there is an edge to it, and I won't be taken down. (Thanks to Jack Kornfield, the other GREAT book I have to read in small doses, because it takes years in integrate)

I watch, like a patient, compassion, detached monk, with unfettered curiosity to see what it is teaching me...to ride it out to its edges. For me in this cancer moment, I feel the most sick when I resist anything about my experience (I resist alot like resting, body signals to drink, sadness, fear, etc.). But when I pay mindful attention to what I am resisting, it just moves through quickly. Anxiety comes from suppression (for me) of any unwanted information or uncared for bodily needs.

I go on to talk about the core usually. That we all have the truth of who we are, the core, and that can never be broken. With the lady I talked to this last week (she approached me after overheaing a friend and I talking the week before), I describe it like this, "What God designed me to be before the world got a hold me of and I began to believe their point of view about myself".....THAT is the core. The rest is just circumstance passing around that radiant light of the core of me like fog passing round me. It can't become a part of me. It can obscure my view, halt my movement forward, but it cannot permeate that core. So just wait it out with curiosity and compassion. This ISN'T you, just an experience. Wow, what a great conversation we had. She was so amazing herself!!!!!!!! She had a great bible verse for this, but I don't remember what it was.

I have had this conversation in some form many times in the last two years. And my understanding of it is growing. When I do have a freak out moment, I know to NOT lean on myself at that moment. To call on a friend who can ground me in the truth of who I am, even if it is just through listening. Some are so skilled, that can speak words that let the smoke pass quickly.

This Sunday, I have been drawn back to a particular church again. It's greatness is in is simplicity. They started a new class based on a book called the Power of Decision by Raymond Charles Barker. And WOOOOOOOOOOOOOOOOOAH. It is like what I was trying to say, but on such a deeper level. It is like a circuit board. I got the parts and pieces, but this book it connecting the bits and pieces and the board is lit up and powerful now. It is fluid rather than pieced together.

Some juicy bits from today:

- People who have added to the world, and expanded what the world thought was possible (airplanes, cars, equal rights, ending poverty) did so because they moved from a place of comfort, to follow a spark of a new idea. They were willing to change, to move from what was safe and comfortable to follow this spark of an idea. They did so with conviction and without pause. They accepted consciously or unconsciously, they were important in the grand scheme of Life (as all are).

- pg 46 " the real you is not on invisible, it is also immeasurable.
- pg 47 " it is unconditioned by time and space, it knows no limitation, only expansion, the unfolding of consciousness unrestricted by the past experience"
- pg47 "It is practical. Every improvement in the lot of mankind came about because someone expanded their consciousness (didn't stay where it was safe, and what they knew....the moved into a sense of knowing something different was out there and they were willing to make themselves uncomfortable for awhile to follow the spark of something new).
pg 48 "Consciouness, by definition, timeless, spaceless, and needs no means. It is complete in and of itself" (this is the core I keep trying to refer to)
pg 49 "It knows no dimensions and does not NEED them, but USES them to express itself. However it is not conditioned BY them. - our subconscious is"
When people realize these things, the shift. They are no longer people experiencing life. The are/were Life experncing ITSELF.

And this is just a few pages. Gooooood stuff. Good stuff.

I was asked to speak on behalf of a charity for those of us with children. They give us some financial assistance to help when the going gets tough. A small bridge, to fill in the gap when you need it. I turned it down. because this week, I got very caught up in fear. I didn't feel inspirational at ALL. But I used that as I sign. I was not listening to something that needed to be addressed and shifted. I was being indecisive and paying the price physically and mentally for it. I am glad she asked. I realized I was feeling ashamed. And one thing this book talks about it to NEVER feel guilty for learning, and learning means making mistakes. So maybe, if the door is still open I will speak. I course corrected and life has been so easy since then.

On Sunday, I read the opening chapter to this book. I saw my missteps, my indecisiveness. I cried my fears away. And as I did, we got a call, we got two offers on our house that day, the next day, my energy has been extremely steady today, and I am speaking without fear. Very cool.

Thanks Unity, Pastor John, and all your bright lights who make it impossible to walk in darkness, because you hold up lanterns on my path when I get lost. Love you all.

By the way. I had the numbers wrong. Doctor showed me my counts today, 79. Not 89. She is beaming again. She seemed almost dumbfounded at the "incredible drop off in numbers!! It is just beyond her..." Lol! She said to keep doing whatever it is I am doing. I get the impression this is unusual. :) lol!

Jenna
Here are a few random highlights

Long Long Time

Just dropping a note after a very long break from blogging. I appreciate anyone still wandering through to check in.

I have had a rough couple of months, but am coming to the end of a several obstacles.

1) Radiation - FATIGUE, wew. But you have to keep in mind your body is processing a LOT, and also healing healing healing. My bones had holes in it, so it needed a LOT of energy to fill those holes in with scar tissue, which is much stronger than tumors. Still in the process of healing, but not the horrid, can't keep my eyes open fatigue. That is passing.

2) The RASH - the mystery rash that took me DOWN. Head to toe. Then to eyes swelling took me to the ER mid January. Which led me to excessively high doses of prednisone. Me and predisone equals disaster! It was a horrid horrid horrid ride. Scary. And with that drug, you cannot just pull off of it. So it took a couple of weeks to step down slowly. Now that that is done...

3) I am coming round. Slowly. It feels like I get my head above water now for longer and longer periods of time. And the energy that is there is new, clear, fresh. I get so excited. But this makes me a little bit more bi-polar-isque. When the pain hits, or chemo I have to hold very very tight to the memory that this is just CHEMO, not cancer talking. But honestly, I get a little scared and a little irritated, and feeling like I am drowning. I just want to keep my head above water.

But at least now, I have several days a week I have good positive energy again. And for good reason. Which brings me to bullet number 4.

4) My counts are still dropping! From 198 a month ago, to 85 this week. GOOD TREND.

Which now brings me to FAQ:

1) Q Am I still on chemo? A Yes!!! My comments are only about wanting to off chemo, hoping to be off - if this drug works wonders. So I am now into month - I dunno, let me count.....TEN. I hear people in the waiting room talking about 6 weeks like it is hell. So something inside has to turn off, be kind of chemo numb - and take life where you can when you can. which leads me to....

2)Q When I read you posts, or see you, you look good, or sound happy? But you are having a hard time...what is really going on? A BOTH. I am having a really tiring, tiring two months, but I take the good time where I can. And usually I end up crashing and recouping for it. It takes all I have in me over the two months to be seen. So when I DO get to get out and do something positive, I REVEL in it. Because it like a thirsty horse being taken to water. I also tend to focus ahead on why I am doing all of this and what I could be doing if I get better. Otherwise, dear God, life would be sooooooooooo depressing.

3) Q Do you still need help. A Yes. Even though Jim is close now, to keep him balanced and not burnt out (imagine being the primary care person for someone who is going through something this intense for two years!), I do still need rides and help. Not as much. But yes, especially the rides. Bug needs to get out of this intense environment and go have fun. Going to the mountains, pick her up on the way. Going hiking? Take the girl along.
Then there is the biggest issue of rides. That is the single most helpful thing. If you have a Monday morning free, and can take a 20-30 minute trek out here, and take me in the hospital (20 minutes) that would help soooooooooooo much. Jim then picks Bug up, and then me on the way home.

I am climbing out of a very hard time. I have other things, that for privacy reasons, I do not post here because it isnt about me. But it greatly influences my life. But I won't post it here. This isn't a place to put other people on display. So hopefully, this other part of my life will find closure and it's new direction and I can get some stability.

So yes, i am happy and sad and anixous, and hopeful and ALL if it. Sometimes all within hours of each other. Pain levels can really effect my positive/negative outlook. So can other stressors. So please don't think of me as above it all and managing it all sooooooooo well. I am doing what I have to do to get by, and stay on me feet and keep my daughter healthy, happy, and safe.

I do feel like I am reemerging. On the verge.... getting there. :) 89 ;) 8....9.....getting there. But by no means done.

Jenna

P.S. By the way. The blog is doing well. I am amazed at how many people are reading this for it not being advertised in any way. And I do see a few faces now following I dont' know. So if you are a reader, (following or not), would you please maybe post a comment on why you follow, that way I can maybe write more to what you might be wondering about, or hoping to learn. :) Thanks!

Something is shifting

I noticed this before the rash/Predisone weeks....I began to think in terms of years ahead.

Then, the "reaction" happened, and all the drug chemical haze stole away my clarity.

But....

SOMETHING has shifted.

I haven't been that "mom" I used to be for Bug for a long time. I am not judging the time I have spent healing, because Bug has been learning a lot about life that most kids don't and I am proud of how we've handled it all.

But, once again, I just noticed this week, something has shifted. I have this energy to give to her again that I haven't in a long long time. Honestly, I was coasting a lot of the time (not neglectful, but not proactive/interactive as much). I know she has been cared for, and shown the world by OTHERS, but not so much me. With me, we are always at home lately and often in the last year and a half. I have a day or two of energy to give to the way things used to be.

But this week, we start rough housing/ticking/playing! We both looked at each other and noticed it!!!!!!!!!!

This morning, we went out for a morning walk together, we drove to our starting spot, and no one had to drive us! And along the way, had our old discussions, instead of me driving on autopilot, just trying to get us "there" and being spacey the whole time and just using all my energy to even walk with her. Instead, we EXPLORED together. Finding the bike shop, the art store, talking about these topics, about the town, and I was engaged fully in teaching her how to get around town on foot. Street names, mountain names, answering so many questions. :)

And at home, over breakfast, we had a whole discussion on the dairy we drive by on front street. Ending with a diagram, and that showed how the milk gets from the cow, to the table. And about the environmental impact, complete with drawing.

I spent time reading art books, the local newspaper (best one I have seen since Corvalis) and art ideas starting popping into my head.

I did taxes, bills, and bookkeeping.

Tonight, I walked (somewhat horrified and overwhelmed) into her unkept, not yet unpacked (boxes still) room, and as a family, we sorted, played, talked, prioritized, and decorated some. (In the end, I did end up crashing and not finishing, and Kara came and read Camelot to me). My friend did the initual set up, and I have been to sick to do bedtime. So I haven't spent much time in that room. But now ;) WONDERFUL! Not done, but we did it as a family and start somethin good....

And now, in my normal midnight wake up, I am reading my mothering books, catching up on developmental issues, gifted issues, and reading forums.

The one thing that has been the hardest in all of this is not feeling like I am "mothering",

But as I scowering the internet for some mothering information, a small pile of natural mothering books next to me, art books at my feet, at the book she read to me at bedtime about Merlin and Kind Arthur.......it has dawned on me FULLY..... ...I AM BACK. ;)

Jenna

Untangling

This came in my email from a dear dear friend who has kept me afloat and helped me get through this tangled mess. So beautiful, I share it with all of you who are the "divers" in this story. You know who you are:

This story was passed on to me from a dear friend and I
had to share it with you since I thought you might appreciate it :)

Love you,
dida

The Whale Said "Thank You"

If you read a recent front page story of the SF Chronicle, you would have
read about a female humpback whale that had become entangled in a spider
web of crab traps and lines.  She was weighted down by hundreds of pounds
of traps that caused her to struggle to stay afloat.  She also had
hundreds of yards of line rope wrapped around her body, her tail, her
torso, and a line tugging in her mouth.

A fisherman spotted her just east of the Farallon Islands (outside the
Golden Gate area) and radioed an environmental group for help.

Within a few hours, the rescue team arrived and determined that she was so
bad off, the only way to save her was to dive in and untangle her.  They
worked for hours with curved knives and
eventually freed her.

When she was free, the divers say she swam in what seemed like joyous
circles.  She then came back to each and every diver, one at a time, and
nudged them, pushed them gently around.  She was thanking them!  Some said
it was the most incredibly beautiful experience of their lives.

The guy who cut the rope out of her mouth said her eyes were following him
the whole time, and he will never be the same.

May you, and all those you love, be so blessed and fortunate to be
surrounded by people who will help you get untangled from the things that
are binding you.  And may you always know the joy of giving and receiving
gratitude.

I am in love with...

I am in love with....life

I am in love with...peacefulness and ease

I am in love with....the turn of the wheel

I am in love with....times of fear

I am in love with...times of joy

I am in love with...that all things shall pass

I am in love with...the beauty of the human spirit

I am in love with....learning

I am in love with....song, and sound, and it's ability to shift any energy to a state of balance

I am in love with...mystery

I am in love with...knowing I am loved

I am in love with...knowing I am safe to just be

I am in love with...knowing I am surrounded by love

I am love with the gifts of this journey, even when I scared now, I KNOW there is way through and all is well.

:) This isn't drugs talking. I am cleared headed and well. My friends helped rebalance my bodies reactions to the drugs. So I am VERY clear now. Even when I was in the midst of the scary moments of the drugs interaction I am having, I KNOW now there is a way though, I am surrounded by those willing to help, and help IS there.

I am just feeling Love.

Let Karen Drucker say it in song...



Jenna

Tykerb Rash

Still trying to figure out the rash issue. I don't even remember putting the last entry in. Talking to my mom today, she referenced it.

Because my face/eyes were swollen, they are concerned and carefully following this. It is exhausting, but today I had a bit of a break from the frantic painful itching.

The plan is to slowly come down off the ER drugs, and if I swell up again...off I go off the Tykerb.

This is small chance it isn't Tykerb. But a reaction to some other drug that has taken some time to express itself.

It is a very tiring, painful waiting game. Honestly friends, my nerves are shot. I am exhausted. And edging on getting every single drug out of my system. When I went to list them to the dermatologist, I handwrote a page of drugs, and told her of others I have taken this month, but aren't currently being taken.

TOO MANY DRUGS

That is what my body is saying.

Prayers. I want to stay on the Tykerb. Honestly, it is very very demanding on the mental side to deal with this constant back and forth, up and down, pain, almost no pain. Numbers up, numbers down. To be so close to seeing freedom for awhile, to have the possibility of it taken away....

I just can't right now.

So, no bright and sunny today. Worn out, mentally and physically.

Jenna

Amazing Week

So, my skin is peeling. Like a snake shedding it's skin I as I see it. From the radiation burn. But I can bend again, and move so much more freely.

I have a horrid rash. Had me layed up for the week (including radiation burn) and in desperate pain that took me to the ER Sunday night. Got some good meds and answers Monday from the doc. It is the "Tykerb rash" but not a hideous looking one, just painful. So we are looking for ways to manage it.

Then she told me about a patient, whose mets had progressed farther than mine did, and was doing well now for two years on Tykerb ALONE. Now she won't say that if things were looking promising to go in that direction. To be in an amazing remission pattern, and NOT go in for chemo weekly. Just take my four pills, at home, daily, and deal with the rash. WOAH. Wooooooooooooah. Thank you Universe, Great Spirit, and angels on earth.

What a birthday present!!!!!!!!!!!!!!!!!!!! 35 today! Whohooooooooo!

Painful rash under control and calming down. Chemo today with Pushpa, whom I love and am so grateful for. Yesterday, was the celebration day. A kirtan with Shantala, and a brunch with friends that I deeply respect and honor. What a good time.

Love to you all
Jenna