Tuesday, November 25, 2008

Songs that make you Happy despite yourself adn other inspiration that make me forget cancer

Everyone once in awhile, I put up a song that inspires me, or just gets me happy. Better than a drug. (Move over Ativan, hellow Rythmn!)

Today, it is the first song on the playlist over at Spearhead. In fact, the whole placelist just gets my sluggish butt up off the couch and I have to move. Motivation. Gotta love it.

Here ya go! Go love the love.
Michael Franti & Spearhead. "Say Hey I love You"

Inspiration number two came from Best of the Northwest. Last weekend, I managed to get out two days in a row and trot through the Seattle Center to see some amazing artists. This guy, is by far my favorite thing I have seen in years. I spun one of his wheels with a crane on it and a deeeeeeeeeeeeep peace hit my soul. Jim and I agreed, once I am working and we have some extra income (oh yeah, those medical bills) we would give one to ourselves for our Anniversary. This guys is so talented. These are prayer wheels. I would go to his website to learn more. He will be featured as a Local Inspiration. I was thinking I would purchase on and incorporate them into wedding ceremonies (yes, I do that too....). He recently was commissioned to do one for the Dali Lama when he came for the Seeds of Compassion conference here in Seattle. Pure gift. I told him that would be a good life. To create such meaningful work, infused with such peace. He agreed, it was a good way to live. His name...Chris Moench, his wesbite is call Axis of Hope.
This might be one of those things you have to experience. Each vessel is weighted, and spins. To learn more, go to his website.


Monday, November 24, 2008

Fatigue and 20 weeks of chemo

So, this week marked chemo round #20. I am kind of tired of talking about chemo and cancer and all that stuff. It is all, in the end, big question mark. What I know for sure, is I am getting tired. Usually, by week's end, I am back up on my feet. The see-saw I am on has me back on the "up" side. But lately, it is like I can't quite get that see-saw to even hit the balance point. So I am going to just slow down and sleep.....a lot. They say that is when you heal and rebuild and make white blood cells. I have been kind of pushing myself. Just to keep going somewhat normally. But this weekend, man, just tired.

Only 4 more weeks to go she said. And then, after that, they will do a PET scan and see where everything is at. Today, her verbage changed, and I am not so sure what the future holds. She likes to play her cards only when she knows for certain. But, I am trying to not to hear, "A pause in chemo" like she said today. Like it is inevitable that sooner, rather than later, I will be back to this again. What happened to the 8 years?

So, it goes back to this. Chart your own course, and listen to your heart.

For now, I am pondering what to do next? School or work? The work I really want to get to, involves school. I can't get that "but...." out of the way. I had always wanted to get my PhD in Psychology, with a focus on consciousness and using art therapy. To start up a practice and teach. But.....darn, there it is again. I will leave it be. Too soon. It is like picking a fruit too soon. But I am happy to have the dilema. A couple of months ago, I had "the shift" into thinking about future things. I knew, things had shifted in my body too, and they had.

I will leave it with that. I am thinking "out loud" with no concern for you listening pleasure. lol! So, best I leave it at that.

Happy Thanksgiving everyone!


Thursday, November 20, 2008

Where to Go To Get Some Sleep - Stage IV Breast Cancer Sites with Positive People!

So, as I stated in the last post....sometimes jumping on breast cancer boards, or cancer boards in general, is enough to induce fear-based insomnia. However, there are some great sites out there. Very few specific ones to Stage IV breast cancer (that I have yet found...the internet is a big place).

Here are a few:
Sheila Miller: Now here is a real pioneer with a spirit like a beacon and such a deep determination to be a part of her own healing. She is my age, and has a deep commitment to staying real, positive, and engage her body in healing. You just think, "Go, go go!"
Be Positive:
The name says it all. She is, once again, my age. What I love about this blog, is her sense of LIFE, her ability to turn lung drainage into a humours event, and how the blog isn't all about cancer. It is just a part of it.
Little Story:
good example of a GOOD story! Short, sweet, and HOPEFUL!
Her blogs are FULL of many positive people. Finding a Stage IV person was tricky. But guess what, that is how I found Sheila (up above).

I had a great chat with a friend today, and then read some more of "It's Not About the Hair". I am REALLY liking this book. She really does represent a positive healthy approach. Grounded, humorous, etc. I am happy to be reading it right now. I couldn't before. I need Stage IV stories. It stung too much to read someone in Stage 1, or 2. or even 3. Knowing things are approached differently.

Wednesday, November 19, 2008

It's Not About the Hair: LONG post today

Kendyl placed "It's Not About the Hair", by Debra Jarvis, into my hands at the Art Bra Auction. I haven't yet had the wherewithal to open it up yet. Even though, I know, I know, the message is positive. It is for the same reasons I haven't yet watched "The Last Lecture". "Jenna, have you seen the last lecture? You really should! It is SO inspiring!" or "Jenna, the Last Lecture, you have to watch it!" I know everyone is only trying to hand me hope on a platter, but I just can't walk down that road yet. Their pathways are NOT my own, and I really need all I have for my journey. I will, one day. Those books will become like best friends who understand what I just went through like no one else. But for now.....focus.

To keep me from tittering off the high wire I now traverse, I have to focus on MY experience with the uttermost attention to every wobble and balance check. I am not an old pro at this, and reading a book while walking on a wire doesn't seem the safest plan.

I have jumped onto breast cancer boards to find an answer to something, only to jump off screaming and with a good case of fear induced insomnia. The people who hang on boards are having hard times, reaching out for answers, and represent a fraction of the breast cancer population. Most are freaked out because they fell off their wire and are hanging on by one finger and asking to be pulled back on. The old timers, ones who have make it across, reach out and get them back on, if they can.

To keep my calm on, I jump back off the boards quickly. There are words of warnings on the boards from "old time Stage IV'ers" to steer clear of boards whenever possible. One of the best pieces of advice I have read from a board was from someone who popped on to answer a question from a frantic person, who was asking what was going to happen to them, what would the pain be, what horrors awaited her? The response, "Have cancer only on chemo days, go live life the others." I haven't read a board since. I may, if one day, I am hanging by a finger on the wire. But until then, they don't feel right for me. I just take on fear.

I hear some of you. "But Jenna you can't live in denial." This isn't really denial. Nooooooooo. I don't consider it denial. I even asked my therapist, she said, "Nope, no denial here." I have been given the "reality check" stamp of approval.

Believe me, after the one clinic "telling me like it will be", I am in NO illusion of the painful, horrible, no good death I will one day experience. Forget about all that. I am alive now! I will experience my own painful, horrible, no good death at some point in the future, why the HECK would I pull that experience into my Now and live my painful-horrible-no-good-death in a long drawn out mental trip a thousand times before I actual have to experience it. I let little thoughts race through, "Oh dear god, I remember the pain my dad was in....", or "what does slowly drowning in your own lungs feel like? Can I do that?!" and I let them run right back out. They have no spot at my table. Only LIFE sits with me. Death just passes through, reminding me ....."One day...one day....better live now".

I have to draw on my OWN experience right now. My high level of empathy means I just absorb their pain and their suffering....even if they are highly positive people. I still "take it on". I always have. So I stay away from detailed journeys. I am like a emotion sponge. I need all my energy I can for myself. It is so easy to slip into the suffering of an another. To feel them wobble and then lose balance myself.

With all that said, I must be feeling close to "looking back", even though they say my journey will never be done. They say, I will always dance with cancer, always have Death walk through my dinner party and remind me my life will probably end in brain cancer and much pain (I flip him off and tell him that they WILL have a cure by then.....and that my dance card is full for the evening. And the day we almost got hit by a mack truck on the way to chemo, well, the irony didn't fail me.). But I must be feeling closer to the end of this chapter. This most emotional, "do I have 3 months, or possible 10 years" chapter.

I know I must feel steadier on the wire, because I picked up that copy of "It's Not About the Hair", stood still on my wire, and read. I see immediately why it was handed to me. This is why, she summarized something, because she has the hindsight, so perfectly:

"I learned so much about cancer from being a patient, and probably the most astounding thing to discover was only a small part of the cancer experience is about medicine. Most of it is about feelings and faith, and losing and find your identity, and discovering strength and flexibility you never knew you had. It's also about looking at life and staring death in the eye. It's about realizing the most valuable things in life are not things at all, but relationships. It's about laughing in the face of uncertainty and having courage to ask for more chocolate and less broccoli." This book is going on the must have list to the right.

And it isn't about not helping the person behind you. What I find, is that REAL people will show up and act like guardian angels. They don't tell you, "Oh, I had this horrible experience. It went something like this....does that help you out?" They guardian angels say, "Okay, take a step, steady, steady, okay now one more.....Good, good..." They don't tell you, you are only 1/3 a way across the wire, they just help you focus on the next step.

Then there are those of us, permanently on the wire. Guess I better build my balance.
Or better yet, I hear my mentor, telling me to grow some wings, and transcend this tightrope walk.

Much love,

Tuesday, November 18, 2008

FAQ Compilations Calls

So, my dear ones, I am thinking it is time to call in a FAQ list. I know some of you have questions. I also know that some of your questions have led me to goooooooood info I didn't think to look up. So I am throwing this blog back to you:

What questions do you have? Post them in my comments section. If you are worried about the publicity, send them to me in email.

I know you have questions. Or need clarification. No questions will bring offense, if they come from the heart.

So, bring them on. It WILL help me. And I might need to clarify something. It is hard to package all the information/experience of this in little tiny bites. So, ask away...


Monday, November 17, 2008

Blood Tests, and Numbers, and Healing...OH MY!

Blood Tests, and Numbers, and Healing
A Tale in Silly Prose

The news just came in from the county of Hoke,
a blood test is back after a nasty little poke.
And those numbers they say,
look quit normal, it's true.
now they seem to be around 32!
I started around 175,
scary, like soon I'd die!!
but now, 175 isn't so true,
try the very small number of 32.
Yes 32, I didn't mistype.
and that my friends is 5 below NORMAL folk count.
Doesn't that make you want to gleefully shout.
Me, I thought my ears did hear her wrong,
so she put it in writing and it didn't take long.,
to let it sink in we are so close to be done with chemo for now,
what a lovely Christmas,
I mean...like...wow!

(This message brought to you by a mom who has had
poetry read to her all afternoon - that you for you patience. lol!

TO learn more about this count, read this information from the American Cancer Institute:

CA 27.29: CA 27.29 is another marker used to follow patients with breast cancer during or after treatment. This test measures the same marker as the CA 15-3 test, but in a different way. Although it is a newer test than CA 15-3, it does not appear to be any better in detecting either early or advanced disease. It may be less likely to be positive in people without cancer. The normal level is usually less than 38 to 40 U/mL (units/milliliter), depending on the testing lab. This marker can also be elevated in other cancers and in some non-cancerous conditions, and it may not be elevated in some women with breast cancer.

Wednesday, November 12, 2008

Local Truths

Here is a quote today I found in the local magazine, Seattle Weekly. It is from a 30-something, musician, husband, and typical creative West Seattlite...who happens to be in the final stages of his battle with cancer. I just thought his quote was phenomenal.

"[Cancer] speeds your whole life up to where you see day by day, minute by minute...to the point where you are so intimate with people that you just don't care what you talk about, because you never know when your last days are going to be."

And that, is the simple truth of it.

Here is the full article, on the album he will release.

As for me, the Zometa is being kind. I am only touched with a flu-like feeling today. I am starting to give way to fatigue, although I resist. I won't anymore. I am going to go lay down and rest instead of resist.

I have been walking around the house singing all day and looking for a good place to take my hubby for his birthday this weekend.

HAPPY BIRTHDAY TO ALL MY SCORPIOS!!!!!!!! I am afraid to list you, in fear of my fatigue making me forget someone, because, you all know, that list is LONG.


Monday, November 10, 2008

The Nuts and Bolts of the Last Leg of Chemo

So, just back from my Zometa/Herceptin/Abraxane day. It was really nice to have a week to get back on my feet! I went in ready to go.

The doc was excited, and seemed certain that the end of the year would see the end of Abraxane! (The chemo drug). We will then switch over to the long term game plan. I will tell you that when I know for sure the details. But it will involve Herceptin, and Zometa once a month for (how long???). And maybe a therapy that stops Estrogen production in my body.

And just to clarify. I am not in Remission...yet. I don't think I used that word after the last scans. But just to be clear, it is NOT remission. (eh'em, mom). I don't want to be in remission yet, because I still have cancer in my body we can easily find. We want remission to be as clear of cancer as we can be.

One last clarification....the bones. I was uncertain of what was going on with my bones. The "sites" are still there, but not active. i guess it looks different on bones. So, sites still exsists, but they are not hypermetabolic. If you have any questions, just write me.

Okay, off to rest.
Hugs to everyone

Friday, November 7, 2008

From 52 to 48 with Love Project

Once again, Jen Lemen has led me to a very inspiring idea. Ze Frank is doing a little project to heal with tensions between the reds and the blues. The 52 to 48s need a little love-fest. He wanted the 52's to send out peace and unity to the 48's. And from looking at the pics, the love is going round.

My family is Red all over. I am the "Blue"sheep of the family. So this is my token to you all you Reds out there. Go find out more!
Franks Site.
The 52 to 48 site.

I plan to add my own 2cents worth. But first I have to go get radioactive and scanned (to make sure the heart is handling the medications well). I will add my own pic here. For now, this is my fav.


this is my pic -------->

Thursday, November 6, 2008

Bad Poetry for a Rainy Day - My thoughts in prose

Jazz is sliding like silk through the air.
Rain is dancing on pavement, like a drum.
The sun is so tucked away,
the house is like a cave.
I need a fire.
My vanity is kicking in, fiesty, but in check.
My hair is thinning, I prefer a wig.
My face is puffy, but so is my body, so they balance out.
My jeans protest my attempts to button them.
I don't care.
I've got jazz, and drip drip drippy rain of November.
Oh, and my breath. I've got my breath.
And good friends who are patient.
Birthday's overlooked while I huddle under covers,
waiting for nausea to pass.
And doctors who smile hopefully, proud of their work.
The thought of sitting around a Thanksgiving table is bittersweet.
Not this year.
But the thought of Thanksgivings past,
filled with laughter,
family frustrations,
and a good card game while the football games play,
well, the memory is celebratory enough for today.
The rain is beautiful,
against the last golden leaf on a bare birch tree.
I want to hug the world.


Tuesday, November 4, 2008

Vote vote vote

I am going to spare you all the voting talk. Did you vote? If you didn't know it was voting day, you probably aren't informed enough to vote. So let's take a fun story break from your election coverage:

This weekend Bug did a elaborate magic show for me. It was cute. It was typical 5 year old.

Then, the surprise ending:

"If you've enjoyed the tricks you've seen here today, you will find how to do them in my book, which will be available for sale after the show."

Oh dear. I have a entrepreneur.


Monday, November 3, 2008

A Much Needed Break

Today, weepy from fatigue, I drug myself to chemo. And much to my surprise, my doc (very congenial today) said I have been going at this for a long time, things are looking good, and my counts are up....and if I needed a week off, I could take it. Get a break, regroup, regain, and restart next week. It was up to me, but she felt confident it would be fine to take a break. From a week of Zometa reactions, to a head cold week, to a week of exhaustion and the mystery stomach/GI nausea that only 2 serious drug could even begin to ease..I am tired.....but I wasn't sure if I wanted to take a break....and I wavered. I knew it wouldn't hurt to do the chemo, but I realized as I could barely keep my head up and not cry, that I needed a break to regain some strength. So I took it. We just did Herceptin this week. Wew.

I am sooooooooooooo worn out. I hope this helps.

She actually gave me a countdown...7 weeks. ;) (in theory - she added).
What a Christmas present that will be (8 weeks)

T-minus 7....

Any extra kindness are much appreciate this week,
sorry to everyone, I am going to have to put fun/hangout visits off another week,

Sunday, November 2, 2008

2 am gratitude list

So, I am up, it is 2 a.m. I am really not feeling well again today. Such bad heartburn, I am still up at 2. So worn out. Wew. Fatigue, nausea, heartburn, paleness. Three meds later. Wew.

So I am going to make a gratitude list. "You nut! It is 2 a.m. You feel like shit!" Exactly. No better time to be grateful. No fancy color though, I am too tired:

- amazing anti-nausea drugs that have made chemo less torturous for millions of people.
- ginger tea
- dandelion root tea
- an all natural latex/wool mattress
- comfy cheap pillows to replace the expensive uncomfortable one
- a Dear Santa list from Bug that included a "stuffed tangerine tree" from My Father Dragon. She made this request up. There is no Tangerine tree, but in the book. And she wants one stuffed to cuddle with.
- needlefelting - so I can make said Tangerine Tree
- lorazapame kicking in, finally sleep might take over
- WedMD describing the difference between a heart attack and heart burn (I was pale as a ghost)
- Bug hanging out with me while I lay in bed all day. Reading to ME, instead of me to her. What a trooper.
- Neighbors who still do trick or treating.
- sleep. I am going to try to get some now.


Saturday, November 1, 2008

Coming out of Flu Haze/Zometa Reaction

Thanks to those patient souls who are still with me here. That is the longest stretch of quiet there has been on this blog. You know it is not so good when I am quiet for that long.

I've mentioned why. First...Zometa. That darn drug. I talked with the doctor about it. I may do some more research on my own. But according to the doc, despite my knock down reaction, she doesn't think it is doing any lasting damage. Me, I am not settled with that answer. Something is saying 'YUCK' in my body every time. Is my body saying that for a reason...like "This is going to burn out this vital organ." She says, no, and plans to keep me on it. Once a month of a flu.......hmmmmmm.

Follow that up with a headcold. 5 days.

Follow chemo up on Monday with a drop down drag out battle for my GI system. I won't get into details, but several off hour calls where made, and THREE anti-nausea drugs were recommended all within an hour. It was scary and painful, but it is done. The origin??? Once again, "we aren't sure". (total silence). At least my regular nurse is back and she is very patient and reassuring. The temp one was nice, just couldn't read her well. We hadn't gotten into that patient/nurse understanding.

Today, I feel down right normal. But I keep crashing out. Feel great, then have to lay down. Almost there. Allllllllllmooooooooooooooooost there.

I can't wait to know what it will be like to be tumour free AND off chemo. But I still have a month and a half or so left. And I want to keep it from dragging me down in what they call "the cumliative effect".

I have picked up crafting again. Not back to the much more intricate and thoughtout collages, but grounding and simple things like needlefelting and knit. My collage work requires a lot more quiet time, "zone" time. The crafting, is something I can put down any given moment and pick up again later and not have to find my way "back" to the train of thought/experiences that got me to the point where I left off.

The other thing that has has my what attention I could give was creating a Shutterfly account of family pictures. NO, I am not making that public. But I will share fun photos that are not family related here. Like this one. I love this one. It is of a pumpkin vine. Yep, same plant as below, just a close up of the spiral.

That is the very dry, laundry list style update. But I am still here. I was just too sick to write.

Happy Halloween.