Friday, October 30, 2009

Happy Birthday MOM!

First of all, HAPPY BIRTHDAY MOM!!!!!!!!

Now back to our regularly scheduled program of cancer drama and healing.

It is often hard to decide what and how to post on this blog. Because each of you have your own filter. Some will read things as dire, others as "things are rough, but not so bad" and others see my spirit strong. All from the same post. I learned this early on and know that I just have to post what is on my mind. It is tricky if I become attached to helping you each process the information I give you. So instead I have to just let it go and let you process and interpret in your own way. I sometimes second guess if I should be writing at all. But I started this, so for now, I will keep going. Just don't read this blog like you would a novel. If you read this, be an active reader. Pray, help practically, do your own spiritual journey. Please don't read it like you are waiting for the ending of a mystery novel. I say that with a bit of cheeky humor and a lot of love.

That being said.....I hide some thing. I definitely keep some of this journey private. But at this stage I cant' anymore. So I am pondering how to continue this blog. It is going to open my very very private self up to the world. And it's judgments on the deepest parts of myself. So I ask that if you continue to read this blog, you do so with deep respect, let your judgments go, and use lots and lots of compassionate "listening" and loving kindness.

I will write more later. I am still in the process of deciding. However, Spirit is lifting me up. And last night, I felt buoyed by song, by prayer. If you had come up to me and said, "You have a really bad cancer that is aggressively attacking your spine and liver" I would have laughed and said you were crazy. I was in the moment, letting all the love and prayers flow, and living very very truthfully. I was JOY. Yes, JOY.

I am learning so much about the power of the "something more" that binds us all. That we can't quantify. That we can see or touch or taste or smell and analyze and rely on to put into research or a formula.

I see and feel the STARK difference between living in fear and living in peace. Of "knowing".

Again, I am pondering where I am going to take this blog now.

Lots of info in this one post. I know. But for you those of you wondering:
I am going to ask the doc some very straight forward questions on Tuesday. and go from there. I am leaning towards chemo, maybe not Abraxane, but most likely. But I deeply believe the missing ingredients in putting this thing into NED (No Evidence of Disease) is not going to be found in a chemo drug, but in doing some deep spiritual work and really truly taking care of my body and it's own unique needs (ie, eating REALLY well and eating for what my body needs, exercising to my body's needs, waking up everyday and my first thought being praising the strength of Spirit and my Spirit and going to bed GRATEFUL GRATEFUL GRATEFUL and then living according to my own Spirit and guidance from the higher source beyond charts and graphs and research)

And that work may isn't about becoming cancer free, but about living FULLY AWAKE. What a different ride that is indeed.

Okay, enough for now. Time to wake up the girl and get her ready for Halloween at school! COWGIRL PICTURES TO FOLLOW. ;)

I am well.
I know that today and in this moment
my Spirit and body thrive.
I don't know how,
but I rise above
and the joy of my Spirit
makes the pain of my body diminish
and I am well.
And the power of Spirit to do this,
makes me humble and happy and


Tuesday, October 27, 2009

Chemo Round 3

I don't know what to say anymore. I feel like I am hitting you all with a cold splash of water and punching you in the gut. But here we go....

It is still spreading, up my spine and in my liver. NOT to the brain. Woohooo, my idea of a head cold pans out.

But the liver makes lots o' sense and I asked "did it go up my spine" because of the pain. Sigh.

So we go back to Abraxane. I can't process all of this right now. So much. So that is that for now.

Not great, no horrid, but a HUGE challenge ahead.


Thursday, October 22, 2009

starting to make sense, Part two

So, my "it's the drugs" theory isn't panning out to the doc. So she is sending me in for a brain MRI and a PET/CT to peek inside and see if the cancer has travelled anywhere new. The brain MRI I had at the onset was all clear, it would be really NICE that is still is.

I think, because of my dripping running nose, and cough with phelm, MAYBE this all over a cold. She is checking for mono. But beyond that, she just feels concerned enough to peek inside and rule some stuff out.

So off I go. MRI's are like being inside a video game, with buzzes and bangs and clangs. fun times.

If you feel inclined to take me on Monday to said appointments and you can clear you schedule for a 10:30-4:00 run, please let me know. I can't go this day alone.


Saturday, October 17, 2009

Something is starting to make sense

Been having a rough month. And I think I finally know why. Once I got still, and could listen and had a few good friends to bounce my "bouncing" thoughts off of, I do believe I have a clue. I have been in pain, sleeping a lot, and unable to fully "wake up" so many days. But it isn't depression. When it is past, I am very happy, peaceful, contented, hopeful. Then this monster comes and shuts my brain off half way. I believe it is a medication I am taking. And today proved it. I was doing fine, well, alert, and then the person with me saw it, I turned "off". Like a switch was flipped. My brain started having trouble processing information and I felt drugged.


I am pretty sure my meds needs to be tweaked. I had asked to be taken off one of the drugs, if not also the pain mends I have been on. They aren't going to like that at all. They always deswayed me. But I am not living my life right now. And there is n point in being here, if I am going to be here, tweaked out on drugs, on my couch, feeling like do-d0. Now I am going to demand it. There are alternatives I can rely on and can put in place.

That being said, I am moving into a 5 day "completely nuture my body" phase. I have been EXHAUSTED and not stopping. As a friend pointed out yesterday, the difference before and after a nap was marked. I know I have been exhausted and unable to stop.

That is where YOU come in. If you are close by. I need your help in "restore Jenna's energy" movement. For the next 5 days, I am resting, resting resting. Doing ONLY that which restores my energy.

I also need:
  • Someone who can take Kara to school Monday and Tuesday. She needs to be there by 8:30.
  • Someone to come over and cook my squash soup, and play scrabble while it simmers.
  • Someone to do dishes every other day
  • Someone to grocery shop at PCC for some basic staples. Apples, kale, lemons, etc.
Things are VERY off. I have spent the last three weeks in a walking sleep, and starting to be unable to have coherent conversations (at least it feels that way). When I do "crash", I sleep for days and can't get my brain to wake up. People around help with Kara. But now I need help too to get through this and get some energy back.

Last week, my friends who came over on an SOS call to help said I sounded drunk. I am really calling it in. I can see the way through, and taking 5 days of letting my friends step in and take care of me is required. I have to be vulnerable and honest right now. But I can see the way through, and that means asking for help.

I have thought about checking into the hospital several time this month for exhaustion. This can be fixed. This can be addressed. And I see how. But that means needing people to lean on.

Got an hour to spare here or there. Something on that list do-able? Let me know.

FOLLOW UP: Everyone once in awhile I go back through this blog to tweak it, edit it, and clarify things, or give follow ups. This one is LONG overdue and very important to me to get out there. If you are in medical care, DO NOT BE AFRAID TO SAY "THIS MED IS MAKING ME NOT RIGHT - WHAT CAN WE DO?" Meds are very powerful things, changing the neural synapic makeup and sometimes that damage, if goes on for too long, can't be undone. I had to be slowly taken down off this medicine, and it does make people "out of it" if it isn't good for them. BE PROACTIVE! SAY SOMETHING! There are options and the docs need to know. I have had to do this more than once, and everytime, we find out way around the med. BE PROACTIVE - it is YOUR body, and your body may react differently than the "norm". Okay? Soapbox gone ;)

Jenna Helm

And food for thought:

Tuesday, October 13, 2009

Must Read Article

Please, to the end.A Rebel Cancer Girl indeed. The info on research funding and metastatic breast cancer SHOULD make your uneasy. Especially after Soma, Amy, and Fritzi walked their tushies off under my name. Did all the money they raise go to met girls like me? Or just the ones they can save? Read on...

Fighting Advanced Cancer is Like Being a Secret Alligator Wrestler

Sunday, October 11, 2009

Those Who Rock, an incomplete and incorehent list

Jean H. ----- Jeri is a ROCKSTAR. I love fate, seredipity, God, the Universe. Thank you for her. Thank you for praying for me, brought me to her. ;) Thank you thank you.

Jeri Rocks. Best day of chemo in awhile and you just SHINE.

Mom rocks. Walked me through a dark spot tonight. Fear fear fear + shit really hurts for too long = scared little girl raising a kid. Aren't we all?

Kevin rocks. It was nice sitting with you today, thanks for the loving goodbye. There is the term LYLAS, you are LYLAB (bro).

Soma, and Amy and Fritzi --------rockstars times three. WOW. is all I can say. wow.

Choir of Light angels. Thanks Carolellen for more chicken soup. It was delicious.


That is all I got the juice for. Something is TRIPPING OUT. Ringing in my ears for two days now, trippy stomach.........

Life is funny. Life is short. Life is sweet. Life can be scary sometimes too.

And of course....MORE is better than chemo, better than blood. I plan to be an angel singing alle allelujah.....


Saturday, October 10, 2009

The Walk is ON

So, I have spent the last two days sleeping, with a quick jaunt out to choir rehearsal somewhere in the middle. I am a wee bit freaked out it is Friday, because I don't really remember the week. I remember going in for chemo and getting a flu shot, some nice music one day, and then an amazing day at chemo this week, and then it is like I have been in a daze and sleeping. I am trying to keep my spirit up. Going through this cycle of I feel okay for two days, get chemo, and get drug through what feels like a mild to moderate case of the flu, with muscle aches and joint pain and usually the inability to keep my eyes open one day a week.....I then spent a couple of days recouping and climbing back out, only to start is wearing on my psyche. Because that one day a week of it "hitting" is drawing out into 4 days.

I know I have said I have been knowing I have to slow down and rest. I think that overdrive went out and I am resting now, because I just cant' stop sleeeeeeping.

And then it dawned on me, as I wake up in the middle of the night..

did someone say Columbus day to me?

The three day walk?

Is it REALLY Columbus day weekend?

And it is....

which means.....

Soma and the Team are WALKING!!!!!!!!!!!!!!!!!

In my chemo stupor, the loss of what day it is, I missed this. I knew yesterday for some reason, I wanted to call Soma.



SEND PICTURES!!!!!!!!!!!!!!!

I remembering hoping to be there. I am glad I didn't buy a ticket. I won't have made it there.
But I am there in spirit and gratitude and am proud of your fundraising prowess! I checked those final tallies and WOW.

Fritzi's blog was reminding us to get our regular checkups and do mammograms.

Here are a couple of things I learned along the way that could save a 20 or 30 something's life that add to Fritzi's advice:

  1. In the MRI place, the doc has signs up EVERYWHERE that INCLUDE TRUSTING YOUR INTUITION. If you FEEL like something is wrong, go in and get it checked out.
  2. Young women have thicker breast tissue, and regular mammograms may miss smaller cancer tumors.
  3. Breast cancer has a higher mortality rate in those in their 20's and 30's because it is often overlooked as being a cyst because the spike in women in this age bracket. It USED to be that it was an older persons, post menopause, that got breast cancer. The reality is different now. So many young women are being "looked over", even with lumps that can be felt. I read this over and over again on the BC blogs and group sites. So we end up at Stage IV before we finally get the diagnosis and help.
  4. Stage IV is considered a chronic disease most often now because of the progressively more effective and targeted drugs and understanding of the disease. BECAUSE OF RESEARCH and because people like the DC Rack Pack walk and raise funds and do the footwork to start research going.

Okay, back to sleep. I forced myself awake to write this and acknowledge the Walk.

I am with you in spirit!

Thursday, October 8, 2009

Naviagting Cancer Website

Okay, this page rocks. It is up and coming and in development. But it is by far my favorite page for reaching OUT to your care posse. So if you are reading this, and have cancer, check this out:

If you are want to be a member of my care team, and didn't get a message inviting you, email me at

Spread the news. This is a good site for coordinating care. That is so difficult to do, because of the various forms of communication now. Facebook for some. Blogging for others. Others use phone calls, emails, or texts. trying to remember who said they wanted to stay informed. This way, I don't have to worry about bugging you or draining you with 20 emails in a month requesting care/help. It is just there waiting for you.

How to get the information out there that you need help is tough now. But this website gives you a calendar. And the members of your care team can access it and check off what they want to do without the circle of emails and texts that can literally take me hours, and I get minimal responses sometimes. Help ususally always shows, but sometime I dont' ask for the help because it is exhausting to do that dance. I am spent and tired by the time I get what I need.

Yay for someone developing this practical and lovely site!


Wednesday, October 7, 2009

StopLights and The Excercise I Use to Center

I am going to let you in on something I hold secret. I think it is time to let that secret go. What a waste of energy to hold onto it, and worry if I say it "out loud" I will....I called names, or be rejected. Blah blah. I am over that now. :)

So.....the secret (ooooh, sounds like a little DVD Oprah loved).

A few years back, I was sitting at a rather major stoplight, wanting to turn. So I had plenty of time to sit and watch the cars drive by. Instead of mindlessly seeing the cars go by, one by one in an energetic colorful blur, I started seeing INTO the cars and seeing the faces of the people passing by. I wasn't trying to do anything. I just shifted consciousness unwittingly, and realllllly took in the faces of each car passing me. And then "it" happened. I started crying, because I saw something "more". I saw Gods expression of creativity in each and every face. I saw our CONNECTEDNESS. I was humbled, and cried these tears of hope and joy at how amazing it was to see the divine and sacred plan of each person passing me by. Grouching, laughing, happy, frustrated. etc. It was all included and it was all perfect. I felt connected to all things and all people and was in awe of it all.

And that brings me back to the exercise I promised a few days back. I missed my window of time to write it down in, but am back after chemo and resting. So here it is:

Take any object. I love taking a piece of fruit for some reason. But it can be anything. Your clothing, your couch, your favorite football. Really, anything.

Hold it in your hands and take a few deep breaths just to slow down the monkey mind we all have in our society. The one jumping around from to do list, to do list. And really settle into your object. What is it texture? It's color? It's weight? Take your time and don't "think" to much about the answers, just let them be and let them go. It isn't about those answers.

Now, that your focused and settled on your object. Let's say, an apple. I see it's beautiful streaks of green and red. I feel it's coolness in my hand, and I maybe smell the flavor of the apple if it is cut.

And this is the key step:

Now I start to trace it's origin and it's web.

I know I bought this at the market down the street this afternoon. And at that market, I met a very friendly salesperson who said Hi and was very kind. She helped bring this apple to my table.

I also think of the produce manager and the produce workers who chose this apple, and it's display and made sure I found my way to what I needed.

I then think about the person who drove the truck, and brought this apple to the store. I think about the company they work for, and the gas they used from some forgein country to drive this apple to the store mananger who gave it to the store produce workers, and then to me. I am grateful for the gas company who gave the truck driver the ability to make the run. I think about the truck makers, probably some forgein country, that made the truck in some factory. I think about that factory worker who goes home to his or her family and has a evening meal, and loves their child, and the family around the table that share a meal.

And my mind pops back to the truck driver here. And they family or friends they go home to every night, and share meals with, stories with, and the food they eat.

And I think about the field worker, who picked the apple, and the farmer who grew it, and the warehouse manager who set the order to the store that I bought the apple from.

And as I let me mind linger on all the connections, and the branches of the connections, and the branches off the branches of connections....I begin to shift my awareness, something shifts to a sacred and deep level. How disconnected we can feel from one another, but how truly interconnected we are in the web.

That moment at the stoplight was similar. But without warning, without trying, I just saw it all in an instant. We really truly influence one another, and are all in this together.

Do with it as you will :)

Friday, October 2, 2009

An Exercise in Holding Consciousness

I feel like expanding on yesterday blog entry, "Everything is Holy Now" sung by Faith Rivera.

Since I was a child, I have never let go of that wondrous feeling that we are even here at all. I may have lost site of it in temporary fits of fear, but in general, that sense of wonder, despite the pains of life, is never far out of reach.

I LOVE the line in the song I posted yesterday. Walking in the woods, smelling the earth after a rain, hearing the birds, reading an email from a friend who reaches out JUST when you felt alone...and they they didn't know it....all these are the little miracles that instill that constant sense of "woah, something bigger is going on here". As she sang in the song, because the fact that THIS world, this body, this mind I have, is even here, so that I can have a conscious experience of Life

Sure, you may be thinking, "Of course, that is easy to do walking in the woods, or being loved by a friend...but what about crappy stuff like cancer, or war, or abandonment?

The ONE thing that brings me to my knees and causes anxiety in this cancer journey is not the proposition of death. We all are going to die. It is leaving my child in uncertain circumstances that are out of my control. That pain is SO deep, even writing it, my throat chokes up, tears well in my eyes. There is a physical PAIN that sets into my body. What will become of her? Will someone catch her? Will this experience make her stronger and more of a powerhouse in her life? Or leave her depleted? It is out of my hands once I leave this earth.

And that could leave me completely depressed. Spent. Done. I could only see that aweful shitty circumstance. And I edge there some days when I am really tired. However, going back to what she is getting at in this song....

What is Holy, Magical, Godlike, Sacred, whatever you want to call that even the experience of anxiety and grief is born out of Love. It is beyond words to me, that we love each other SO MUCH, that we can feel THAT DEEPLY. And we feel THAT DEEPLY because of Love. And when you get into that space, you get that sense of something...beyond what we are capable of expressing in words. And that space, that stillness, where there are no words to use to describe it, is sacred.

So even my fears, even my anxiety - they are expressions that are precious and an act of love. Funny thing is, once I realize that....the fear and anxiety drop away, and all that I Love. Because I feel that connection to something bigger than me, and Peace settles deep into my heart.

The question is, we have experiences here and there, that awaken us to this sense of wonder, of amazement...of "more" than we can how do we hold that consciousness through the dark times?

I will leave it there, for now. And tomorrow, post a couple of exercises that I do to bring me back to that state of awareness when I am feeling lost or disconnected from it.

For now, ponder it for yourself. Make sense of my ramblings, my attempts to put this all into words. When have you felt that "something MORE is going on here than I can put into words and express? When have you felt a profound sense of connection and peace and..."w"holiness?


Thursday, October 1, 2009

Faith Rivera

So, sometimes I get asked how I don't just become a puddle of anxiety and nerves and hide under my blanket. But believe me, I do have those days. And what I cling to that is the truth of life for me is SO WELL this song. So even when I am crying, or scared, deeeeeeep inside, in the eye of the storm, what she sings in this song is true for me. The cancer, the growth, the separation, that bad things happen to good is all in here.

Today I am at home, feeling ill. I got a flu shot with my chemo. This is GOOD. It sat me still. I haven't sat still in months. And it allowed me to explore music, and I found this gem and it renewed hope. See, it is all web, and the web will always take you back to some point where there is good.

So, instead of feeling afraid, or alone in this sickness today, I feel supported and loved. Strangers are reaching out to catch me, offering me harbor, good friends cry empathic tears and send me healing prayers. And in all this there is beauty. Call it God, call it Great Spirit, call it Great Mother, call it whatever, but it is that beautiful sacred bond that fills me with Love. Just acknowledge that it is there, even in the darkest of times. It never leaves you, never deserts you, we just get wrapped up in fear and forget.

But let me stand aside and let her sing it out best. She comes around this area, and she even more powerful in person. I will keep you posted:

Faith Rivera - Holy Now

Peace and love,