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