Hi Everybody,

Obviously, since y'all haven't heard from me here lately
there must be some rumblin' behind the scenes, no?
And indeed there have. I also have a Yahoo! group called
"WeLoveJessa" where my caregivers have been keeping
my friends and family up to date on what's been going on
with my life and more specifically with my health.

Suffice to say, it ain't been so good folks. Here's the latest
update sent out by Gayle, Karen and Lev, who have been
involved in the everyday-to-day of it all:

==============================================

Dear friends and loved ones of Jessa,

There has been such a wonderful outpouring of love and support for Jessa
and all of us involved in caring for her during this challenging time in
her life. Thank you for being an important part of that. And thank you,
especially, for staying in touch with her and with us. Your love and
support has been very valuable.

Jessa has amazed us all, including her medical team, at her improvement
after stopping chemotherapy. She had better energy and lucidity, and she
was even able to go without using supplemental oxygen for 3 months! This
is not to say that the last few months have been easy, but it is well
worth noting that her prognosis on September 30 (the day she started home
hospice care) was 3 weeks to 3 months. It was a blessing for her to see
2007, and it was a blessing upon a blessing for her to see spring!

The last month or so, however, have reminded us all that we are dealing
with a metastatic disease. Jessa's baseline pain medication was switched
a month ago from fentanyl patches to oral methadone because her fentanyl
dosage was steadily increasing up to the maximum safe dosage. For the
last several weeks, the medical team has been adjusting her methadone dose
slowly upwards, trying to get it to a level that would control her pain
adequately. About 10 days ago, she began getting short of breath, so we
restarted the supplemental oxygen. In the past week, her shortness of
breath has been increasing significantly, and at the same time, she has
had a major increase in her pain, probably due to a coughing fit
reinjuring or refracturing a rib that she fractured 25 years ago. We've
been working closely with the medical team to get this back to a bearable
level.

Fortunately, it seems we've arrived at a more manageable balance. Jessa
is taking methadone more frequently, along with ibuprofen, morphine, and
lorazepam, and her pain has been tolerable for almost 48 hours now. This
is a great relief! She's still short of breath, though.

The events of the last several days made Jessa realize that her pain and
shortness of breath could, indeed, get to a point where living is no
longer bearable for her. For this reason, yesterday she began the process
of filing with the Oregon Death With Dignity Act, a ballot initiative that
passed here in 1994 which permits terminally ill patients, under proper
safeguards, to obtain a physician's prescription to end life in a humane
and dignified manner. You can read more about Death With Dignity at
www.deathwithdignity.org/ and at
www.compassionandchoices.org/ -- the latter organization is
assisting us as we go through the process. Jessa's wonderful oncologist
stopped by the house yesterday morning on his way to a family vacation in
order to start the paperwork for her, as she has to make the request in
person.

Jessa having started this process does not mean she is ready to take that
prescription now, nor even that she ever will! It just means that she
wants to have that option in place if it gets to the point where her pain
and/or shortness of breath become unbearable. It takes about 3 weeks from
starting the process to getting the prescription, and then, once she has
the prescription, she is not ever obliged to use it.

So, that's the scoop here at Deep End. If you have any questions or
concerns about this, please contact Jessa.

Love and blessings,
Gayle, Karen, and Lev

==============================================

So dat's da scoop.

I will post selected comments from the "WeLoveJessa" list here,
stuff appropriate to post in a public blog. I hope you all will chime
in where you see fit.

It's been a wild ride, this crazy/sane life, and it ain't over yet.

I'm sure someone will let you know when the fat lady sings. ;-)

Peace, Joy, Love and
Blessings like the Fabulous Cherry Blossoms in my back yard,
~Jessa~

Headaches.

Not conceptual, you know... ideas, that challenge our brains too much... no.

Headaches. Plain and simple. Pains in my head that creep up the back of my head and then lodge in a few of several points in the sides of my head. Big pains. Steady. No throbbing. I prefer that to throbbing. Throbbing headaches really suck. At least I don't have those. But, whoa, yeah, baby, I have headaches. Big bad ones. Painful enough that they stop me and send me to bed or to lie on the couch or sit and rock gently in my fabulous old rocking chair.

To what cause? I don't really wanna guess or dwell on it. I'd rather just get through them when they happen, and/or do what I can to avoid them... There is a likely possibility that it's the lung cancer metatstasizing to the brain. Lung cancer has been known to have a propensity for metatstasizing to the brain. That's not something I like to think about much, but I suppose it's good to be aware of such things...good being a rather relative term here.

So far they don't stop me much, these headaches. On occasion they've shut me down, sent me in search of a cool dark and dry place. Yeah, that's me, Jessa, hangin' out with the root vegetables.

Or a much better idea than that, curling up in the soothing arms of a snugglebuddy who knows how to hold me just right with the minimum of motion, and pet my head the way you'd pet a sleeping kitty without waking her up.

So there y'have it. Another bit of what's happenin' in the life of Jessa. I can usually use headache time to work on the dreadlocks project, but sometimes the hand-rolling is a wee bit too much motion, mon.

Anyway, life still goes on. Yup.
In fact, YES!! HEY! Ha-ha! Life goes on!
Which is to say, in an ebullient way,
I STILL Live. Despite the headaches.

Much love and joy and peace and blessings to you all,
~Jessa~

Hi Y'all!

Here I am again with a great big Thank you-Thank you-Thank you! to everybody for responding to me on this project! You've all been great to give me so much good feedback. Thanks ever so much!

I stumbled upon a new technique the other day that will save me some time. As I mentioned, I have an old hairpiece that Gayle brought home made of synthetic hair. I've been taking it apart and making it into dreadies. Well, it doesn't lock up the greatest and is a bit light and pulls apart easily. So I got to experimenting. And I discovered that my hair, which I mentioned before is amazingly perfect for dreading, works REALLY well as a "locking agent". I was able to take the synthetic dreadies and sprinkle them with a very light coat of tufts of my hair pulled from the braids we shaved off my head just before I went in for chemotherapy. And HEY! When I sprinkle the other dreads with my own hair tufts and re-roll them they lock up TIGHT! I mean really tight! And hold together stronger as well. I've already used this technique to shore up some weak spots in a few of the other natural hair dreads with the hair added from what my friends and community have sent me.

Every time it works like a charm! For one thing, my hair turns into tufts really easily and those tufts will lock up the other dreads tight-Tight-TIGHT! Very Cool!

Also, a big thank you to all of you who are taking part in this project by sending me bits of your own hair. All I can say is WOW! I am so honoured that people want to be a part of this! And, YES, of course, I'm still receiving donations! Anybody who wants to send me a bit of hair, a lock or two, or even a piece of or a whole dreadie, I will gratefully and excitedly accept! Just send me a private email for my snail-mail address and I will gladly add your bit to my growing pile of dreadie extensions.

I now have TWELVE extensions made. Some need a little more work and they are of varying lengths, so things will probably change a bit as the project progresses. But hey! So far, so good!

Now... Anybody know where I can get a LARGE size styrofoam head? I'm willing to order off the Internet or mail-order it. I need a large one cuz I have a LARGE head (Hat size 8 1/2).

Anyway, thanks again everybody for your support! You have all been so kind. I'm so grateful for the sweetness and generosity you've all shown me. Again, Thank you-Thank you-Thank you! From the bottom of my heart!

Peace and Blessings,
~Jessa~

P.S. I'll be posting a listing with pictures of the dreads we've made so far soon. Watch for the dreadie with *your* hair in it!

P.P.S. Also, some of you who already sent in hair... I've been doing my best to keep track of whose hair is whose, but unfortunately I have a couple of baggies with no labels on them. One has a white felt heart in the bag, and another is tied off with some kind of yellowish plant straw (like those used in floral arrangements.) Anyway, what I'm trying to say is, if you already sent in hair, let me know and that may help me to firgure out whose hair I have no labels for.
Thanks! Love & Light, ~J~

Hey Y'all!

~Jessa~ here again! So, we finally got started on making the extensions out of my old hair. My friend Mayra came up from L.A. for a quick visit before she heads off to Colombia for a year. Turns out, she's done dreads before on a couple of her friends. So at her sweet nudging, We got started making my dreadie extensions.

After all I'd read I thought I could figure out how to do it. Well, it turns out to be ridiculously easy to dread my hair. Like, my hair is just perfect for doing this. Here's a pic of my hair before I cut it so you know what it was like:
people.tribe.net/jessajos/...350e3c0a13

A little history:
Before I went in for chemotherapy, we braided my hair into 15 braids and then shaved them off and saved them while I went off into a crash program to find a way to live with my cancer. Now here it is over 7 months later. I took three chemo treatments and quit cuz they were killing me. Here's me a while back just after I quit chemotherapy:
people.tribe.net/jessajos/...11a7fd800b

I'm in hospice care now and I'm not only miraculously still here, I'm breathing well and feeling stronger than I did last July when they diagnosed me. So, Mayra and I decided, hey, I seem to be sticking around for a while, so it must be time to do the dread extensions. Here's a shot of me now (03/05/07) sitting down with my friend Mayra to make dread extensions:
people.tribe.net/jessajos/...732b7af349

You can see, my hair has grown out a little bit but not long enough to do anything with. So it'll be a little while before I can dread it into shorties long enough to add the extensions. But that'll give me time to make lots of extensions. We've made 9 so far! Here's a shot where you can see some of them laying on the towel on the bed:
people.tribe.net/jessajos/...7882e96724

Part of the project is that people supporting me in my intention to live with my cancer are showing their solidarity by sending me little bits of hair that we'll put into some of the extensions. And my partner Gayle gave me a big chunk of hair that she had braided into a large ponytail and cut off some years back with the intention of donating it to "Locks of Love." But considering she is my primary caregiver, it seemed totally appropriate for her to donate it to ME :), call it "Dreadlocks of Love." Also, Gayle came home today from lunch with a friend and she had scored this curly fake hairpiece that actually has texture very close to my own hair, so I thought I'd try it and see if it dreads up. Sure enough, it did that same crazy quick-lock thang that MY hair does!

Now that gives us a BUNCH of hair to work with! After making 9 dreadies I still have 11 of the 15 braids of my own hair, probably %85 of Gayle's big pony tail, another 10 or so bits of donated hair and the entire curly hairpiece minus the one dread I made out of it.

So Yeah! Woo-hoo! This project is STARTED! I'm learning too how to mix and match different hair to make dreads of different colors and quirks. This is gonna be FUN! I can do pretty much whatever I want because my hair acts like a locking agent. Any hair I use if it's not locking up, I just add a few tufts of my own hair and whap! It wraps right up and locks tight. COOL! So far, every dread is different, so I'm gonna stop now and document whose hair went into which dread so I can identify them later in case people want to know. :)

Okay that's my first update. Watch this thread for pics and progress!

Hugs 'n' Blessings,
~Jessa~

Hi Everybody,

It must just be enough time since I last sent out an update that people are wondering again how I'm really doing. So here it is, not the sugar coated version, here's how I'm really doing. I feel okay inside myself I'd say, oh, about 1/2 to 3/4 of the time, but that's not any normal view of what people walking around in the world think of as "okay". So I'm gonna try to be as straight with you as I can. Again, any of my friends and caregivers are welcome to jump in with their radically different versions. I can't always trust that my perceptions are anything like anybody else's these days. <wild grin>

First off, I'm NOT "okay" by any normal definition. When I say I'm doing "pretty good" that doesn't mean I can get up and go for a walk or scoot off to my friends house or go for visits or even *do* anything. It means I'm not in the corner of my bed in pain or throwing up or just sitting there crying endlessly. It means I can talk on the phone and probably carry on a decent conversation. Maybe I can get out of bed and move around a bit. I practically *live* in my bed. I've been out of the house exactly once this month. I sleep whenever I can, which is probably a lot. I actually don't know. I've got some brain damage from the chemotherapy that affects my understanding of linear time and messes with my memory. My hair is growing back, but nothing like what I had before. Hopefully I'll live long enough to see it grow long again. Right now, I probably kinda look like my brother, Mike.....(with small boobs).

I'm mostly lucid most of the time that I am awake. But I don't seem to think the same way as anybody else anymore. I have several caregivers, the main one being Gayle. (I live with Gayle and her husband Lev.) Gayle keeps track of all my meds and appointments etc... and does her best to keep me comfortable. I couldn't do what she does. I can't do the math anymore. Anyway I'm on so much drugs I'm not capable of operating heavy machinery. ;-) Gayle is actually doing a fabulous job. I am totally awed by her diligence and ability. Lev helps some, but mostly he goes to work and keeps a roof over our heads. He's also good around the house, technically minded and can fix things like we know how to do. He and I have become really good friends and we play well together, both games and music. He's not a professional musician, but he's sweet and fun and I love his voice when he sings in Arabic. We have fun with music and board games and cooking, although he mostly cooks with Gayle. They're very much a team when it comes to the household here at "Deep End" (that's the name of the house we live in.)

Gayle, being my main caregiver, is at it damn near 24/7, so she needs a lot of backup. Fortunately we have a lot, and we're in the process of asking for more. She is relieved throughout the week on different days by different people. Karen does Tuesday or Thursday nights, depending on Lev and Gayle's schedule, and is usually over for a couple other days of the week as well, and we try to bring the girls (Claire and Emily) over to see me at least once a week. They love to play on my big canopied automated hospital bed, and I'm happy to let them. Anna takes care of me on Wednesdays and I usually have my Acupuncturist in on Wednesday as well. My Hospice nurse, Karen Haley, comes once a week and gives me a pretty good checkover. Teresa (Young), a good friend of ours, also cares for me at least one day a week. There's also a hospice volunteer, Melanie, who comes once a week.

So mostly, I'm not in much pain. I have Fentanyl patches on my back that keep me dosed with about 175 micrograms/hr and then I have morphine and oxycodone to cover pain that pushes through that. Mostly I'm okay. The patches are doing the trick (currently at 175mcg - 02/19/07), and I can be comfortable and move around the house a bit. I manage to play the piano almost every day and Lev just keeps a video camera running every time I sit down to the keys. He's also been helping me get my music gear together. Mostly cuz I gotta get rid of it somewhere. We'd like to get a little E-bay sales bench set up so we can send things off to people as they sell or just ship them off to my friends and family.

Last week and this week, Anna and Teresa (our friend Teresa Young) are helping me do inventory on what's left. I have stuff left in my room, in a room in the basement and also in my truck, (although technically, the truck itself has been sold to Karen. My car is long gone.) So hopefully while we're cataloging, we can also indicate (as much as possible) where (or to whom) an item needs to go.

It's weird, in that, it's like I'm moving one last time. (Teresa (my sister) even asked me in chat the other day, "Is Jessa moving again?") But *I* am not going to complete the move. I'm moving out of my body and off the planet, and all of this *stuff* has got to go somewhere. And I can't just leave this pile of stuff for my friends to deal with! The gist of it is the old saying, "You can't take it with you," and, well, it's true. None of this stuff is gonna be able to go where I'm going, so we gotta get it places to go. I see this task as my last real job. At least the pile of stuff is finally down to something manageable.


To tell y'all the truth, so very little of what people do or act upon in this world matters to me anymore. The real stuff, love, joy, sorrow, connection, heart, peace, the cleansing of the body and soul, these are what moves me.

Someone accused me of sounding like a prophet the other day. I laughed and "reeled it in" a bit. No need to sound like a zealot now. ;-) I'm not interested in the trappings of holiness. But I *AM* interested in the Sacred. And when I go through one of these grueling experiences where I'll be damned if it doesn't feel like I'm being extracted from my body, I want to know the wheres and the whys of what we're doing here on Earth, why we are who we are, what we're responsible for and what we're not and who is and where is God(dess) anyway. Occasionally I get answers and that astounds me! To get a clear, nearly verbal answer to a prayer, to ask a holy question and get an answer, well it almost makes the trudging through the pain worth it.

And so this is the other part. I don't know if I can come back here and be like I was before, I mean, a regular person. I feel like I've been exposed to this other "higher level" (and higher responsibility) world and the Beings there see me and I've "seen" them and, well, I'm aware of stuff that I couldn't know as an "ordinary earthling". It can be very uncomfortable to talk about because it sounds real egotistical to anyone else who hasn't seen through the Veil, and kinda bogus, because the Glories I have seen I don't have vocabulary for. We don't have words for those things in English. But to be touched by them is truly heavenly and I have been touched by the Divine.

And yet I'm still here. Sometimes I don't get that part. Not the "why am I here?" but the "Why am I *back* here?" I've gone through the soul searching, the deep-steaming tear-streaming prayers of the agony of my condition and I've had my head and hands and heart held by Entities for whom I have no physical description. I feel like I've been taken apart and blessed and put back together again and then...I end up back here. Why?! It baffles me. If they sent me back with a clear purpose I might get that, but it seems more like they're pushing me to be functional in a Spiritual way beyond what is usually expected of a normal human being, but that it's up to *ME* to figure out (or perhaps choose...hmmmmm) WHY I'm back here. What do *I* have to offer? What do *I* have to give that is so unique or necessary that this cadre of "holy spirits" are working outside the realm of the ordinary ways of human existence to keep me alive? Truthfully, I really don't know for sure, but I do have a guess or two. Maybe they just like the game aspect of it. "Okay, let's see if she guesses right!"

But for me, I'm thinking it's this "Love Based Living" idea. I still haven't been able to really *MOVE* on it yet. We've had a few meetings and I've seen the power of it in small quantities and I've seen a few individuals moved to step forward and really commit their hearts, but I haven't hit upon the idea that really rings the bell yet. How to make it multiply. It's like, I need a "vector." A Vector is the mechanism by which some thing moves through a system. Perhaps LBL needs a vector and that's what we need to find. But why me? Am *I* supposed to find it? Or come up with the idea or what? Why keep literally dragging me back from the doors of Death to do this job? Is it that mportant? Hmmmph. Maybe it is. Maybe that's it. Maybe it really *is* that important.

Okay, that's about as far as I'm gonna get on this ramble. I hope y'all are listening in the same depth of heart with which I'm writing. I really don't know if what I say, the way I say it, gets across to anybody these days. Am I making any kind of sense here? A little feedback would be welcome. No, actually, a *LOT* of feedback would be welcome, even if it's just to tell me I'm a crazy old lady and I need to go back to sleep now. At any rate, I'm done for the moment, cuz I just done ran outta steam and I'm not willing to put off hitting [send] any longer.

Let me hear what y'all have to say. I'm very interested in what my journey has stirred up in others. I'm extremely grateful for any and all responses and resonances you might have to offer.

With Love and Joy, Blessings and Grace,
~Jessa~

And Back Alive again today. Wow.
The healing magic Gayle and I have been doing
has really opened my breathing.
I'm running 92%-100% oxygen saturation these days.
That's better than "normal".

Unfortunately I still have about ZERO stamina
which I'm guessing means that,
although I'm utilizing my lungs very well,
How much of that lung tissue is actually working
is an open question.

I would guess that it's directly related to stamina,
so, the more functional lung tissue, the better stamina.
My motion in action seems to bear that out.

What I'm interested in now is how to increase my stamina
(useable lung tissue) without overextending the capacity I have
(currently functional lung tissue) cuz when I do that I crash.

And crashing is bad. Very bad.

Today was FAB though. Without too much trouble, I got a
whole lot done. Not without good help though. :)

Big thanks to Melanie, Anna, Angel, Lev and Gayle for
being here for me, adding that helping third hand (or
first and second for that matter).

For this moment I'm gonna say, Life is Good!
And hope that I haven't been tapping into tomorrow's
reserves whenever I've had to push a bit extra today.

Powerful Real Peace (Visualize it NOW!) and
Good Governance from our newly elected leaders.
HEY, WTF!
I've been having the most improbable wishes come true!
Why not ask?!!

Big Love and Wild Blessings,
~Jessa~

So, yeah, there I was all alive and stoked about it.
And then yesterday I crashed, pretty hard.
Not my worst, but a crash nonetheless.

And now today, my body temperature is not regulating properly again.
<sigh/sniff/tears>

Ah, well.
Love is still the answer.
For the rest of *my* life.
No matter how long...or short it may be.

I love you all, my friends.
Thank you so much for your continued support.

Peace and Blessings,
~Jessa~

I just gotta say,
Whoa!
Fuckin' Whoa!
January 8th, 2007,
and I'm still breathin' on Planet Earth.

Ha!

The best prognoses said I'd be gone by now.
Ha. I am SO here. And getting stronger!

I'm Alive, my friends. ALIVE!

HEY! I'M FUCKING ALIVE!

This counts! This is a freakin' miracle every day.
And that's how I'm living it, as a freakin' miracle,
e.v.e.r.y. .d.a.y.

I'm breathing really clearly.
Fourth stage lung cancer
ain't supposed to let you do that....
But I do this weird radical thing...

I recognize the cancer as myself.
It's a part of *me*. *My* lung cells gone solo.
Like little microscopic gang members
who just wouldn't play the establishment game.
Why should I be a fuckin' lung cell when I can
be an INDIVIDUAL? Why should I work with the BODY?

When you say it on a global scale, it sounds like
humanity is Gaia's cancer.

Psssst..... She knows this.
I've made a different choice.
I've recruited my cancer.
We're gonna do love, every day,
until we all die.
The longer and better we do love,
The longer I get to live.

Think I'm nuts?
I'm the wacko breathin' clearly
*after* I quit chemotherapy.

Love. Love is my choice.
Love is a huge part of my treatment.
Conciously. Clearly intentionally.
Think I'm nuts?

I'm ALIVE.

Breathing, clearly and wildly.
I am SO alive.

Livin' on Love.

Anyone wanna join me?
Cuz, from my perspective,
Life based on loving is amazing and REAL.

Don' believe me? Just ask my friends.
Y'all are invited to comment at this point, cuz
you KNOW what I'm up to and how well it's workin'.

LOVE PEOPLE!
It works!

REALLY.

Big Love, Wild Blessings and great gobs of Goddess Goo,
~Jessa~

I move ...
sometimes without form,
sometimes, with too much.
Learning to draw my boundaries in a new world.

I give...
Mostly love.
Sometimes a motion, word or a perhaps a push
But mostly love.
And mostly always with love First.

But I sometimes miss it.
I've learned to be wrong again.
To be able to be wrong and have it be okay.

"Ooops sorry," goes a long long ways if you really mean it.

My brain goes a bit sometimes.
And sometimes it's hard to tell.
Sometimes, it's not my brain.
Sometimes it's the world. Really.

Sometimes something is wrong with the world.
We all know it, yet we gloss over those moments
cuz if we didn't, we'd have to acknowledge that
the world REALLY REALLY ISN'T what we pretend it to be.

And so we ignore the same black cat twice,
we erase from our own minds the winks of monsters,
and rebuild with fervor fear and fury,
the very things which pretend to give us form but don't really.

We reanimate from the *inside* and we *know*it.
So why don't we *DO* it?
Why do we let what's "out there" shape us?


More to come,but all the phones just started ringing....

Blessings and Feedback,
~Jessa~

The moon visits me in the night
filtering through the tall trees of the park,
a stand so thick it looks as if I'm in the forest
and yet I am in the middle of the city.
And on me she shines, this bone white moon
Her light filtering through the now naked branches,
sparkling off my beaded window curtain.
itself made of moons and stars and suns,
funny that, this moonlight, is reflected sunlight
now reflecting as moonlight reflected off the
little suns on my curtain.... Beauty...
The blue salamanders in the sarong as my canopy
Dance their wide little asses down to the beach
swaying to the beat of my foot
tapping to the music in my head
Music of the moon....