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