Transitions

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Hello all of you patient readers. If you still check back to this blog, I am grateful for your persistence. I believe the cycles of life ebb and flow, from external, to internal and back again. My recent year has become a very internal journey, and I consciously chose to pull back and tend to my life with a quieter, more contemplative personal time. Many choices, and transitions have been occurring and I believe when something truly valuable to you is in the "birthing" process, holding it close is called for while you make your decisions, take some baby steps, and then adjust.

I have plans to change the scope and content of this blog in very fundamental ways. It started as a way to keep many friends connected to the in's and out's of my personal stats. Chemo, no chemo. Test results, things people can do. But it has evolved beyond that now and so I am deliberating on what the next incarnation of this blog will be.

For now. The holidays. The spiral to the center of the year, and the time of a tiny flicker of light held within the darkest times. I can so relate.

Recently, I "ran into" the biography of the the life of someone I deeply identify with, and it only took diving back almost millennium to do it. I came across this 900 year old mystic nun, by "accident", when my body was breaking down from fatigue, and I took a day to be quiet, and recoup. And by "accident" learned about the life of Hildegarde of Bingen. She was a nun from Germany around 1100 AD.

This piece, which she composed, I can feel in my bones. One of my favorite things is music in the woods and singing in chant style. So I LOVE this version of Hildegarde. Our lives parallel in many ways, and I had never, ever heard of her before. She was a nun, mystic, scientists, artist, composer, a bit of a rebel, etc. She came close to death, after years of repressing her inner calling, and came out of it with visionary work. (May I follow her footsteps!!). I always joked I should've been some sort of Buddhist nun or monk if I hadn't followed the motherhood path. But maybe it is my Catholic Italian side that is calling me.

Eitherway, you didn't come here to get schooled on 900 year old rebel nuns. :)

Enjoy this beautiful piece, may it bring a moment of stillness in the hectic pace of the holidays.

See you next year!

(Added Feb 2011 - I've had the lovely opportunity to talk to Marisa herself. She is as lovely as these songs. She isn't coming to the US anytime soon, but I promised I would make sure a link to her site was up. If you find this music calls to you, go here www.marisa-music.com. It is available on CD or digital. For US readers, the digital is cheaper because of shipping, and kinder to the environment.)

Many Blessings,
Jenna

What does Harmony Hill have to do with Mojo?

What a fun enigmatic start to a post, eh? But seriously, I found my center, got a chance to find myself again, and got re-inspired all in 3 days at Harmony Hill.

I posted about this retreat center awhile back. And just this past week, attended the 3 day breast cancer retreat. It is just too much to post about here. But I can tell you this. After 2 years of slowly changing, adapting, and getting lost in the woods, this was the trail of crumbs leading back out and back into the world.

So I am going to post just this for now, if you or a loved one are experiencing any issues surrounding cancer it is worth every second of your time to check this place out. Retreats for cancer are offered FREE of charge. Even if you are from out of town (and there were several people in that category), this place is worth the plane ticket and then some. If you are local to it, all the better.

I have yet to experience a place in this cancer journey where I felt 110% completely supported, understood, nurtured, quietly looked after with such a respect, NO patronization, no pity, no fear. If you are on this journey, or have completed it, this is a place to truly heal.

They do more than cancer retreats, (the rest of the programs are for a fee to help support the cancer retreats) so it is worth a look for anyone reading this. But if you feel inclined to give this holiday season, please consider supporthing this amazing program/place.

I feel peaceful and rejuvenated and hopeful that I can handle this journey once more. The resources, faculty, participants and the all that went on there feels cleared away the cluttered collecting in my mind/psyche/energy/heart and reminded me what quiet strength is all about.

My take home lesson, vulnerable and powerful are not opposing forces, but required attributes that happen simultaneously. I have learned to be more gentle with myself, and others, and in doing so, my power stores are restored.

Thank you to all the participants who might read this one day.

Please consider supporting this organization to make this program accessible to ALL people. Medical debt runs high in the cancer world, making this program out of reach if it were to be a fee program. By donating, you will allow cancer survivors (and that is ANYONE touched by cancer), a chance to do healing on a deep level. Thank you.



Jenna

The Shortest Update - Guarenteed

Chemo - fine
side-effects - not so bad
daughter - 7, securely in 1st grade
weather - windy
inner cheerleader - slightly annoying with the jump kicks, but helpful
big girl britches - securely fastened

Cancer - 0 Life - 1

Jenna

Hereafter - Trailer (HD)

Wow. Thank you Clint Eastwood. Thank you.

Jenna
(who is living life, not writing about it at the moment)

Your Semi-Coherent Overview of Restarting Chemo

Don't say I didn't warn you:

Okay, Day 1, 3rd time on Abraxane in conjunction with the continuing biotherapies (Herceptin, Tykerb, Zometa). Cancer counts not tooooo high, but not staying put down low. So, without alarm, we restarted today. I kind of thought it was a joke, and it would just go away. Denial.

So here is the short short version:

I managed to do this with a great deal of CALM, a tinge of sad, a swig of "but I don't wanna be left out of life again dammit" and then onward to be a big girl and take my medicine.

(If anyone wants to design a "get your big girl panties on" tshirts like Soma and friends did for the Breast Cancer 3 Day, that would rock)

Not tooooo bad. Definetly got the chemo cocktail today. Went from feeling vibrant, to feeling like I took a good dose YUCK. But at the end of the day, not tooooo bad. Wondering how to traverse this time round.

I just have a general calm. Did my life stabilize after a year? Woah.

Cool. Take the "long view" as someone I know says often.

Night,
Jenna

Changing Habits

So this is a edited blog entry, originally posted on an amazing Metastatic Breast Cancer board. We were talking about "Are we doing enough?" and about making changes in our lives to support as healthy a lifestyle as possible.

There is a myth about Met. BC. That we die, quickly, and all we think about is death, and we live miserable lives because of death.

Uhm, n-o.

These women thrive WHILE going through sometimes, often times, brutual treatments. I have met many a women now who are going through this 5, 8, 10, 12, 18 years!!!!!!!!!!! Not 2. Sorry. Nope.

And the key on this board, between living in fear, and thriving is making positive changes that enhance our immune systems, and turn victim into warrior-goddesses. Someone recently said we were like sticks and twigs, all woven together, creating an unbreakable nest in which we can heal safely.

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Tthere is a system in Health Psychology about the stages of change. We had to study this thing UP AND DOWN AND ALL AROUND.

Basically, it looks like a spiral staircase. Along it are:
No feelings of desiring change at the beginning all the way to an integrated "no thinking" involved new habit.

But instead of a staircase, it is like a slide. As we progress through the stages (from no desire, to "hmm, maybe I could feel better", to researching, to attempting to change, to full integration) we will ALWAYS backslide at some point down the spiral.

And this is where Pema Chodron comes in about loving kindness. I am re-reading her book "When things Fall Apart". So much more poignant this time 'round. I was just reading the section on meditation. (or in any conscious work we do)...where we can see ourselves for who we TRULY are, and when we fall out of alignment with our purpose (such as meditation and thinking) we simple observe ourselves/actions/thoughts without judgement and label them ("thinking, eating sugar, self-loathing - or whatever your break from alignment there is) and then simple choose to refocus our attentions on what we are CREATING (health digestion, healthly self image, etc).

Maitri is what it is called. The act of loving kindness. We can do it with no one else until we can do this with our own journey. AND it is the key to moving yourself back upward on the spiral to positive change.

I can't help but just send KEEKS (actual name changed) so much love for her earnestness and her honesty on her journey. For some of us the journey is about food and coming to peace with it (or into alignment with what is wellbeing for us), for some of us, it is about letting go of feelings of unworthiness that pollute our bloodstream with chemicals that cancer loves, most likely, as in ANY human journey, it is all of the above. And at different points in our lives, it is about different issues as we do become conscious beings.

And that is what this board is all about for me. A privileged to sit in a sacred circle with other women who are understanding this journey on a conscious level (even when we fall asleep to ourselves momentarily).
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In-Joy
Jenna

Okay, breaking the silence with this. THANKS MEL! :)



And life is coming full circle and to a better place all around. Not without it's learning curve, but none the less, a freedom. And I feel this way, having to return to chemo and all. I think I am learning from mistakes (or life lemons). Rough week, full of every possible mistake, yet I knew there was wisdom in this and waited it out with a few tears and got the "ooooooh, I get it!" message of the week.

Hope anyone reading this is in good health and good spirits,
With Love, always In-Joy

Jenna

Getting Oriented after Chemotherapy

The ebb and flow of long term disease treatment is, well, disorienting! (In case you've not been reading...being disoriented has been huge the last couple of months). So I took a break.

And I wrote this:

The Blessed Fool

Oh, the blessed lucky fool!
Who can stop along her pathway
Turn her dirty face toward the dusty path behind,
And see!
Thorny briars, painfully crossed,
Shredded clothes snagged and torn,
And the sole worn shoes long ago discarded...
And Realize her nakedness,
Save for her ruby ring,
and laugh.

Finding my way slowly, patiently, compassionately and sometime frustratingly... :)

Jenna

It all hit me...and then..........

It is Time...I have to admit to it, I just want to be like this child and hide under my covers for a few weeks. Let all this pain and disorientation pass. But I get ahead of myself. Let me start here:

I have been having a tough time lately. My POWERHOUSE through method is failing me (duh!). I would LOVE to be impenetrable to life's curve balls, and be shiny ALL the time. I tend to hide and be quiet and not let people know when the sour of life's lemons has just been too much. And I want to hide under the covers and just pray and cry and hope someone will save me. I know, life doesn't work that way. We lean on each other, we help each other along, but it, in the end, is YOUR decision as to what you do about it. How do you traverse the "I've had too much, my nerves are shot, and I just want to cry and drink red wine on some Tuscany hillside town." Oh, right.....life says "not right now!". So what then?

I don't share EVERYTHING here, because I want to protect the privacy of those around me. I decided to put MY journey up, not expose others journeys. But I can say this... I have been battling with the the loss of my identity. I think many long term cancer patients, chronic pain patients, or any other variety of life altering events, can attest to this feeling anywhere on a scale of 1 to 10. I am about a 9.

To save my life, I have had to be tossed in a blender , and the "chop" button hit several times. In between blade churning, there was a dash of body acidic chemicals here, and new drug chemical there, take that body part out there, oh and that one too, strip as much estrogen as humanly possibly from hormonal make up, and rearrange my neural synaptic make up, and add a dose of pain relieving radiation there (thank god!).......... and in the middle of it, rearrange my entire life (home, marriage, work, home again,)....pour into chilled glass and serve.

For the first time in a life....I hit the proverbial brick wall. Or as Paul Simon wrote "believing I had supernatural powers, I slammed into a brick wall". My old bag of tricks isn't working....(No Yoga, music outlet, or flavor of Ben and Jerry's is touching "it"). I know I need a new plan. I need to accept my new "new". But how?

It is scary. I did what I had to do to get through this year. I have been told that I am one tough broad as they say. Yet my body and soul are telling me they are raw, desperately in need of the attention I gave my cancer cells. I need to give equal attention to my mind/soul as well....and NOW. They need a break from the life altering stresses. But how? I can't travel the world...or climb a new mountain peek. I can't sit in a monastery for a month and chant and pray. This mountain that looks like Everest, I am sure is more like the foothills of Everest, but it feels none the less, like I might need some help.

Today, I called out to friends and said "HELP! Something just isn't right here! This isn't ME! Something is off!"


At the moment. I feel like a cartoon character who, after a good smack to the head, has all those swirly stars and loopy eyes. But it is abating, and my sight is slowly refocusing. My friends dusted off my dirty face, swept away the stars and tears from my eyes, stopped my head spinning (I just can't get Daffy Duck, with his spinning beak out of my mind). Now it is up to me. Thank you dear dear friends. Count this girl lucky and blessed to be loved unconditionally.

So, now I can really hear my body, my soul, and my mind are truly disoriented. I can hear them calling out to STOP.... get rest, rejuvenate...but was at a loss as to how!

Then I came across this blog entry from 100 Days in Bed..... a brillant tidbit. She post it on the Crazy Sexy Life website. Hitting your brick wall? Wondering how to get back up without drastic life altering changes? She is BRILLANT. My whole point of this post is to get you to her site. These images are from that site.....says it all.

I will leave this to you to go to her site and read. I won't re-post it here, because she deserves to have her feisty site of "There is another side....and you will get there! I did!" blog be visited in its own right. Please do so!

All I will say is, "Week One, Day One......" Don't know what that means....read her blog. Thank you adventure girl. Writer of comedy, and savior to those battling life's lemons.

Jenna

A Few AWWWWESOME Retreats for Cancer Survivors

So, I am in a bit desperate need of respite from all that has transpired last year. While a few choice pharmaceutical and herbal options have calmed my frayed nerves to think straight again, I am going in for the deeeeeep quiet I need. In my searching for a place to rest my mind and heart, these resources came to me. Thought I would share.

1)Harmony Hill - This is already on my list. Across the streets for the Hood Canal, this center is for people experiencing their cancer journeys. It boast two FREE retreats. A One Day retreat ...and a Three Day Retreat...for FREE. Lodging and all. If you are under the care of an oncologist, you may do personal retreats for $80. And the accommodations are hands down the nicest I have seen for this price. You can even bring a caregiver along for the free retreats as well. For those without cancer effecting them, they offer PAID retreats. These support their free cancer program.

2)Doe Bay - a non cancer specific retreat center. Anyone can go there. And in the summer months, indeed they do. This is rustic retreat center on Orcas Island.... with a twist. From campsites, to yurts, to rustic cabins, to fancy cabins with full kitchens, baths, electricity....eat in the cafe, or use the guest kitchen. There is a guest bath, kitchen, yoga studio, cafe, general store, boathouse, soaking hot tubs, stages, gardens, etc.....

3)Breast Cancer Recovery: This is specific to breast cancer, and not the Northwest. Retreats to revive to soul. See the link for more info.

4)Kids N Cancer - this is child specific...for children "afflicted with cancer". It is Greek Orthadox based and I don't know too much about it. But it was mentioned to me recently and thought I would pass it along....

There is so much more......but this is a start.........send your suggestions and ideas.

Jenna

A Touchstone

I am going through a phase of disorientation. I am realizing that I am not just going to pick up where I left off. That life doesn't fit anymore. My body is different, my life is different, and most of all, my perspective is different. So I went back to this poem I wrote at the onset. I feel like I have aged 30 years since then, not 2 years. I realize I am not going to be picking up right where I left off, and I don't know I want to...it would be like a 50 year old making decisions on their life and minds when they were 18. But the truth underlying this poem is still real.

I am not a disease.
I think of disease more as a verb, not a noun or an adjective because it is transit as all disease is. It has a beginning, middle and end.
It is just a stop along my way that will teach me and transform me.
It will fall away, and become my past and inform my choices in the future.
But all that matters is Now.
When I let fear in, I remind myself that all that matters is Now.
My fear is usually not of anything present,
but what I fear might transpire.
So I return to the moment I am in.
And the truth usually is:
Now, my heart is beating.
Now, my body is tired.
Now, it is full of energy
Now, I am in intense pain.
Now I am free of pain.
Now I rejoice in the beautiful energy of life.
When I fear what isn't there,
I lose my moment to live Now.
That is all we have.
Moment to moment.
That was true before anybody named my form of disease.
We all have our own brand.
Sometimes, someone naming a passing disease,
just brings that reality of NOW into acute awareness.
We can use that intense awareness of "all we have is now"
like a salve to heal any disease we have in our minds and spirits-
and thus return some strength to our bodies.
Pain, illness, disease are part of life,
suffering is optional.
That is true, even when I forget it.
Please remember this,
I am so much more than a disease.


Jenna

A New Chapter - Tykerb Works!

For the past month, I have been given the reprieve from chemo. One because I hit the wall and was feeling so ill I couldn't walk around my home. But also, the effectiveness of the Tykber/Herceptin mix has been I-N-C-R-E-D-I-B-L-E. In December, things were looking shaky. Abraxane really wasn't turning it around like it had before. But once Tykerb was introduce it has just been like the cancer for the most part, was turned off. 800 point drop in cancer markers in one month. I was over 1,000, last count 67 and holding. 35 is "normal".

That being said, during this month while on the chemo break, I had the PET/CT to see what was going on inside. And apparently, not much. Some tumors shrunk from 3cm to .5 and are inactive. Most of them are very quiet or inactive!

So we are holding course. No more chemo (Abraxane). We are so impressed with how well the Tykerb (a biological therapy - which targets only cancer cells and disables them), that we are going to let it do its work without the chemo. Herceptin (another biological) and Zometa (for the bones) will stay in place as well. Which means, I won't feel like a mac truck hit me!

Please keep up the prayers. It is typical for cancer at this stage to find it way around the therapies eventually. There are two more promising ones coming down the pipe. Or, that I just get my body to do the work for itself and turn off that cancer for good.

Life all around is stabilizing after a very tough year. For all the friends who didn't hear from me, you were in my thoughts. It just got that bad. I had to pull in like a turtle and let the healing happen. Within myself, my family, and our lives.

I was ready for anything yesterday. I had a peace. And that piece is still there. I am looking forward to gearing up to start working creatively again at first. Getting some writing and art going, helping my brother with his up and coming BRILLANT website for travel, and being with my daughter, and music, music, music...and a few walks on the beach..

I can't believe this year that past. But wow, what a good place it has brought us all to now.


Blessings,
Jenna

Listening to the Rain, the stream, the birds

You might think, three weeks off chemo, that I would be throwing myself head first into "catching up" and trying to do everything I haven't been able to do. That is Jenna of yester-year (how is that for snazzy linguistics). But I knew going in, and with a good reminder from my physical therapy, and one day of pushing it too far, that this time of definite pause in chemo, would be a time of recharging burnt out batteries, brushing off dust, moving atrophied muscle and eating well while the tummy could take it. So far, I have stuck to that. My self defined goal, was to get my mojo back, plug into my sources of strength, hope, and recharge, and not go Type A on myself.

And honestly, it is a bit disorienting. This year has brought tremendous stressors, tremendous change, and tremendous healing that crisis can bring if you allow. I have stared at my own demons this past few months. Those being feeling scared of being unable to care for my own body, not being fit or flexible, not being constantly in the flow of "life" (I learned my misconception there). I do not understand how one month ago, I could barely walk, was swelling with fluids that prevented clothes from fitting, and fighting like a girl on a mission depressive feelings from pain....and somehow, off chemo for awhile, dancing around, singing, feeling that connection to the flow of nature, warm hearted. I feel almost stunned.

But that re-entry into "the world" is different than re-entry into "life". The two are SO easily mixed up. In our society, it is take take take, go go go, busy busy busy, improve yourself improve yourself improve yourself. It is insane once you step out of that chaos, to see how hard we push ourselves and what we value. I never really lost the connection to "life" just the "world".

I was describing to my dear friend this week, how exquisite going to drop my daughter off was now. EXQUISITE. I am in love that with word now. Because inside it, there is joy, and bittersweetness, and the understanding that things are fleeting. Somedays I didn't even get out of the car,and just watch the cherry blossoms fall on sidewalks where children giggled and pranced with lunchboxes in tow. I watched some parents walk with purpose, some ran with their children playfully, other parents marched in a stressed "I am late for my work" pace, thinking they were keeping their stress in check. I loved the sun on me, the gentle wind, the rhythm of the life of the world.

For the first time this week, I managed to visit a friend outside my home. Walked Alki looking for beach glass, sitting on a log catching up, watching dark low clouds give way to sun and back again. EXQUISITE.

I have learned my fears (being seen all bloated and semi-eyebrowless is one of them - sad maybe, but true), but overcoming them and sitting in my PJ's with a friend collaging and going from chattiness to quiet and back. (No, still can go out in my PJ's yet).

All I care about right now, is family, friends, and health. To have a chance to be connected again, in the flow of LIFE, not in the hectic pace of the world, is indeed EXQUISITE. I spend the day garnering energy to give to those three things.

Today, I sat on my porch, drinking tea, eating strawberries, watching birds, bunnies, and deer. I danced for exercise, sang for joy, and phoned friends and family. I grocery shopped with a particular LOVE of the farmers in our area, noticed the rhubarbs brillant hue, thanked the deli worker for a lovely sample of stuffed bell peppers, and bought the colors of the valley in tulips. I even did the bills in peace (sometimes, seeing a $93,000 fee for ONE service at the hospital scares me, but also makes me extremely grateful for how much money people are sinking into keeping me around - and insurance to curb the cost). I have good happy energy for Kara when she returns. Most likely for games and Harry Potter reading. Hopefully a good dinner.

And that is my day. Wow. You might think "ordinary". YEP. :) Exactly. Exquisite.

Be Well, In-Joy
Jenna

HeartMath to reduce Stress/Pain/Anxiety

I just took a nice break and did a program my therapist suggested called HeartMath. It is so cool. I preface this post with I am not affiliated with the company, I am not a salesperson, or get commission...although it is going to sound like I am because I love it so much!

She used this program for her family, and in her practice to help clients with anxiety issues. When I was talking to her about my pain levels, and how hard it was to try to meditate through the pain and even hit that "calm and balanced" feeling, she suggested I try out a program called HeartMath. She let me try it in her office.

What it does: It is a computer program, that uses a device that clips to your finger or ear, and monitors some basic physiological indicators of stress vs. "coherence" states. It gives you visual feedback to let you know if you are in a low/med/high state of coherence (calm and balanced). You have different options for trying to achieve that state, and also on getting the feedback of tracking.

You can go it on your own, and do your own techniques, or you can use one of their "games" to help. Either way, you get feedback on how well you are hitting a "coherent" state. You can try to chill using one of their visualization games ( ie., the rainbow game, where a rainbow grows over a mountain sky scene as long as you hit the coherent state and you reach the pot of gold, the whole time birds fly, flowers sway in accordance to your arousal state), or you can follow the light on the finger monitor (red,blue, green) or watch the more medical type screen with just bar graphs, lines, etc...

I haven't hit such a deep state of relaxation in a long time, besides when I do yogic chanting or go to my hypnotherapist. But to be at home and just "drop" into that state....ahhhhhhhh (deep breath out). I haven't been able to do that in a long time now.

What is cool about this, is I have tried various methods and it has helped me find which method really works the best, quickest, and longest. The results were surprising!

If you are dealing with anxiety, or pain, I highly recommend this program! Again, I don't sell it, or get commission.

My background is in health psychology...this is exactly what we studied. I have an extensive background in yoga, and meditation as well. And this is by far, the most accessible program for mainstream use. I used to get the same results from meditation, but all the meds and pain have really frustrated that effort.

Here is the website. To get set up is pricey, but worth it. My therapist got the okay from HeartMath to share her copy, so I didn't have to buy it, just to piece that hooks up to my ear/finger.

I have also suggested it to several of my college buddies who have gone on to counseling/therapy work.

This is going up in my suggestions column on the side bar..... Weeeeew. Nice.

http://www.heartmath.com/personal-growth/overview.html

Jenna

But what does it all mean?

Hear those crickets chirping. I have neglected this blog a lot this past couple of months. At first it was because I was soooooooooo stinkin' tired. And in pain. But the past couple of weeks saw a reprieve from chemo because my numbers were so low and I was so hitting the wall with side effects. But I just was given another three weeks off completely. I don't even have to go in for Herceptin, because I got a three week dose this past Monday, along with my monthly Zometa. And that gives me THREE weeks. Wew.

In the meantime, we are going to do a PET/CT scan to peek inside and see what is going on. Tumor markers can sometimes be misleading. My doc said she doesn't expect to find much (?) Not sure what she meant by that. But I will leave it at that and just wait and see.

One doctor describe my markers pattern as "the cancer appears to be inactive". Now some of you got very excited by this, I am too. But I thought I would clarify a few points. I am on a break because I was hitting a wall with side effects....and the numbers are so low...not normal, but low. The cancer being inactive doesn't mean it is gone, it just means it doesn't appear to be actively working. So I very well probably have dormant tumors in there still. This is still all incredible news, great spot, but just not "remission" or "all clear".

And that is just the way it is at this stage. Some of you say "When your done with all this...." uhm, there is no "done". I could have a miraculous spontaneous remission, and I am ALL for that.

As they told me up front, "We no longer see this as a deadly disease at this stage, but a chronic illness, like diabetes. You never really get "over" diabetes, but you can manage it. And sometimes that management goes better at certain times. However, the management, all the drugs, are still very very very tiring. I was about ready to walk away from it, because I was SO in pain and tired from the treatment itself. But luckily, I get a break and we get to regroup.

And that is the long and short of it right now. And I WILL take it.

If anyone still reads this blog, wow....thanks for sticking in there. I was really too tired, and in pain to really write. But ahhhhhhh, a second wind. Amen.

Jenna

A Week's Break

WOW! After some very tiring months and a heck of a run in with edema and pain, this girl got her first break since weekly chemo started last June! If you ever needed an endurance person on your team, I think I won my badge. :) YAY for a break!

Jenna

Sing it out time - Polka Dot Dot Dot

Ggroup: Polka Dot Dot Dot - album: Love Letter to New Zealand - song: Small Words Bigger Lessons.They made their way to me through a friend who saw them play, bought the album, played it all the time, and made me fall in love with them. There is a good MP3 version if you google it)

I am in LOVE with them. Can I be them? One of them? Trade places? Rocks rocks roooocks.

Jenna

Still here

Hi everyone! I am still here. I am really facing some unexpected hurdles with pain. But my doctor said, "Each place the tumor was is like a fracture or a broken bone, those HURT even after the tumor is gone, just like a broken bone".

Now I have understood this before. But yesterday, when I remembered they stopped counting the number of tumors in my hips....no WONDER I hurt just walking from the car to my house. It is making me out of breath, and just wanting to sit down and worn OUT. I am trying to put myself in the mindset that if someone came up to me with a bat and hit my hips and spine....I would treat myself differently. I would approach healing differently. I would be PATIENT. I expect just because my markers are low, this should be over, and I should be FULL of energy and hiking.

But FIRST....I have to rebuild muscle around broken bones....while still on chemo (yes, I am still on chemo....from taking to some of you, it appears I have confused you on that point). And there is no end point in sight yet.

I am hitting a low point here, but also a turning point. I just keep praying for the where with all to keep going. 3 years of pain.....well, I am learning to practice what I learned in school (a degree in Health Psychology). But it is far far more challenging than I ever imagined. My whole body and biochemistry has changed, and is constantly shifting. THAT I never factored in, and am learning I need to work with here.

Wew...I have to get to Physical Therapy, but sick to my stomach and that makes my muscles weak. Hmmmmmmmmm. Determined though......

Jenna

525,600 Minutes again

Coming up on TWO years of beating a disease that once ago would've killed me in months......this week in church they sang this.....sums it ALL UP. I got another 525,600 minutes....and so much more lessons in love than I ever could've understood before this experience...one of those seconds spent in anything but love just is SO wasted...doesn't mean be a doormat...it means do everything from a centered loving place and you will really really LIVE.

GOD BLESS MUSIC!

Oh yeah, MUSIC

I was having a hard time moving through the haze of Zometa this morning. Had to go into the hosptial for a die study of the port they use to infuse chemo safely into my bloodstream without frying my veins. I did NOT want to go. WWWWWAAAAAAAH.

Ah, but good ole mom is visiting. And she started singing....this....and it got me moving...

YAY MOM!

Here is that music that used to get me moving...

The "quiet" and the quiet Courage

It has been very quiet around this blog lately, because I have been dealing with some very private, not for this blog life issues.

I am doing pretty well. My energy returns more and more, as the counts drop. On the other end of it, my hip and low back pain have me walking like someone beat me up with a bat. OUCH. Physical therapy did start last week. It has brought some relief, but at the same time, I spent most of my weekend legs propped over a large pillow, kind of cranky to be slowed down, just as I feel the engines revying up. grumble grumble.

But the private life has all my energy going towards the issues at hand, so this has been a quiet blog. I do not wish to air here, private family matters.

But I will share with you, a beautiful prayer a friend read to me over the phone. It is muy muy importante to those of us living life. A good reminder, especially when you feel tired, and run down and maybe a wee bit self-deprecating about how well you are handling your life situations.

In one week, one friend read this to me, the next, Ms. Direction gave me a framed Certficate of Excellence for grace in challenging circumstances.

For anyone dealing with cancer, who still wakes up and finds one things to bring to their day, wether it just be managing pain in bed, holding the hand of a loved one, writing a novel, or digging a well, whatever it is.... I know how much energy and courage it can take to over ride the messages "you are sick" ....this is for you!

The Universe Gifts Me With Courage In All Things - Julia Cameron, "Blessings"

I cherish my own courage. I salute myself for the brave action I undertaken in my life. I focus with clarity and appreciation on the choices I have made which have required courage and self-determination. I applaud myself for my strength and my daring. Rather than belittle myself for my fears, I choose to honor myself for the bravery with which I have often walked through my fears. I count back in specific ways and enumerate for myself examples of my own courage: the new friendship I have undertaken, the steadiness I have shown in a difficult job, the honesty I have displayed in opening a difficult conversation. I honor myself for my bigheartedness in the face of challenges from which I could have-but did not-shrunk back. My courage brings blessings to my life. My courage blesses the lives of others.

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

HOLY TYKERB BATMAN!

So, over a month ago, the doc walked in with my intuition in hand. I had told her I was getting that I should be taking a pill. We went over a few chemo pill options, none of which seemed right. But I kept insistening, she kept looking. And lo and behold, she went to a cancer conference.

A NEW (old) pill, used in a new way that the trials had just been released on. It showed that Herceptin resistant patients were showing amazing improvement when given Tykerb along with Herceptin. Basically. The Herceptin doesn't let it reproduce from the outside, the Tykerb kills it off from the inside. I have links to this research in an early blog entry.

So, we started our own trial on me a month ago...........

We follow CA 27 markers. This checks a protein (?) that only breast cancer cells let off when they are growing and reproducing. These guys stay in the bloodstream. Every 2-3 weeks we do a count check.

A month ago, when this little experiment start, my markers were around 1000.

Yesterday we tested again, about a month later.....

drumroll please...........

198

A "regular" person on the street runs this marker from 0-35. In a week, at this trend, I will be at 0. ZERO.

That my friends, if it holds, is the beginning of REMISSION. How long it holds, we shall see. But the next thing down the pipe, super herceptin, which overcomes Herceptin Resistence and is working WONDERS. It is called DMI, and they are trialing it at Johns Hopkins I believe. Not on the market yet.

heheheheheheheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

POW - a few months ago I was wondering if Iwould be making it through. I let go into faith and followed my intution like a bloodhound. God I love my doc. :)

Jenna

Breathtaking Video - The Third and the Seventh by Alex Roman

Please watch this to the end. Then read the spoiler at the bottom.

Why is this on a breast cancer blog? Because it is my blog, and I can post it if I want to. hehehehe. No really. Because, Jenna, pre-BC, was an artist. Jenna in the break I had from chemo, started film school. Jenna still loves art, architecture, and film. And this is so inspiring. And somedays, when your skin is burned by radiation, and all you do is want to sleep (not want to, all you DO is sleep), something has to keep you grounded in YOU, so you YOU don't speak abotu yourself in the third person anymore:

Please watch this in full screen mode and watch to the end.

The Third & The Seventh from Alex Roman on Vimeo.

Now, if you didn't catch that......NONE of that was real. It was ALL CG script. I am still in disbelief myself.

Lovely.

Radiation ends today. I can stretch again! After a year, I can stretch my arms above my head again. Totally worth the sunburn/poision ivy patch of skin on my back that is making me nuts. But that shall pass.

Yes, still on chemo. ;)

Jenna