paint brushes, yoga mats, and Stage IV Breast Cancer. A "How to Deal" Guide.
Saturday, December 27, 2008
Merry Christmas!
I know this is a few days late, but I was too busy doing Christmas to chat about Christmas. We've been snowed in, so much so, my mom and stepfather couldn't fly out. But we managed our way over to a friends house, and was warmly taken in for the day by her family and friends. It made our day feel like Christmas completely.
Once again, MUSIC for you. I recorded a Faith Hill PBS Christmas special (that girls got some pipes on her!). She kept the special filled with beautifully arranged traditional holiday standards. But had just one new song. I am going to share it with you, because, WEW, makes me cry every time. She took the birth of Christ from Mary's perspective. And if you are a mom, it will hit you in the heartstrings. This song is about her journey to becoming the mother of Jesus. But oh, how true it is for each child that is born. It is like we have been given a piece of heaven, and the challenge is to keep them awake to their sacredness and their gifts they each bring into the world. The challenge as mother, isn't to teach them, so much as help them not fall asleep to their divinity. To make a space for them to realize what special gifts they bring into the world and how each child, and person has something to bring. Some fall asleep to that. Other soar into it. What a gift, to bring heaven onto earth. That to me is Christmas, and the message of the story of Christ's birth.
Merry Christmas!
Jenna
Click on the picture to hear the song.
Sunday, December 21, 2008
Solstice, from Mundane thoughts to Gandolf the Grey
Aaaaaaaaaaah. Solstices are one of my favorite times. Winter wins out as my favorite of the two. This year, an unexpected surprise for our area. Lots, and lots, and LOTS of snow. We may get some every year, but this year is going in the books. Here is a picture I took with my phone. And that was just this morning. Last we measured, the ceaseless snow has piled up to 8 inches. Now, for all you mid-westerners browsing through this page, you may scoff. "Pisawh, you silly weak North-westerners! Come to our land, of ice and snow that towers above our heads five months out of the year!". But for this area, unprepared and untested in driving, everything is coming to a standstill. Throw 75 mile hour winds on top of it, coat that with ice storms, and, well, things just got interesting. Oddly enough, we still have power. Usually, a small gust seems to knock it out around here. See all those grand semi-old, very big evergreens we live with here? They love to lose limbs, and they love a good snow storm to help with that.
Luckily, this has us cozied up, Christmas tree lit, fire crackling, and snow literally piling up on our doorstep and we have a still, quiet Christmas one rarely experiences nowadays. Between chemo (still shaking off the last effects of it) and snow, there is no frenzy, no traffic jams, parking lot searches, and testy customers in line. Only stillness and finding light wherever you can. Creating your own warmth, your own fire. That is the heart of Winter Solstice. In the darkest of times, you CREATE light and get by with less than you thought you could.
Kind of like this year. My worst fear is realized (that and being locked in a room covered with crickets and a warped clown, lol!). I really truely have walked through my "dark night" and made it out the other side.....even if this body loses. I really do get to see how strong my heart/soul are becoming.
I was watching Lord of the Rings (yes, I am really that much of a geek, thank you). There was this scene, where Gandolf is riding, straight into a battle against the massive force of evil and darkness, dragons swooping overhead. And Gandolf, the Grey, wise wizard of Middle Earth, rides on his horse, lifting his staff which is illuminated so brightly, the light alone it pushes back the forces back the seemingly impenetratble forces of darkness. (Still reading? Good...) And I had this realization, so akin to my situation, I cried (yes, yes, a sensetive geek...move on).
Our gurus of the day, the people we call heros, are those who can radiate light, in the midst of dark. They are our modern day Grand Wizards. Seemingly magical in their ability to hold to the truth (good, light, loving, etc.) in situations that break many mens spirits. In fact, they ride, straight into the mouth of darkness to bring the message that Light is still present. We want to hold them up as magical, because we can't see in ourselves, or have not yet learned, how to hold our own space, our own power, our own truths, in the midst of trying times. But the truth is, there is no magic to it. It is a god-given power. Part of life. Part of the tools we must evolve within ourselves.
And it comes back to that light, in the darkness. WE must create it. Call it forth. Some say Winter Solstice is a reminder that light is return to us from somewhere outside of us. I think it is a reminder that even in the darkest times, it will come because we call it up from INSIDE us. If you pay attention, and become very very still, and quiet and listen...you will find the ember to fan, and feed and light WILL come.
Happy Solstice!
Jenna
Luckily, this has us cozied up, Christmas tree lit, fire crackling, and snow literally piling up on our doorstep and we have a still, quiet Christmas one rarely experiences nowadays. Between chemo (still shaking off the last effects of it) and snow, there is no frenzy, no traffic jams, parking lot searches, and testy customers in line. Only stillness and finding light wherever you can. Creating your own warmth, your own fire. That is the heart of Winter Solstice. In the darkest of times, you CREATE light and get by with less than you thought you could.
Kind of like this year. My worst fear is realized (that and being locked in a room covered with crickets and a warped clown, lol!). I really truely have walked through my "dark night" and made it out the other side.....even if this body loses. I really do get to see how strong my heart/soul are becoming.
I was watching Lord of the Rings (yes, I am really that much of a geek, thank you). There was this scene, where Gandolf is riding, straight into a battle against the massive force of evil and darkness, dragons swooping overhead. And Gandolf, the Grey, wise wizard of Middle Earth, rides on his horse, lifting his staff which is illuminated so brightly, the light alone it pushes back the forces back the seemingly impenetratble forces of darkness. (Still reading? Good...) And I had this realization, so akin to my situation, I cried (yes, yes, a sensetive geek...move on).
Our gurus of the day, the people we call heros, are those who can radiate light, in the midst of dark. They are our modern day Grand Wizards. Seemingly magical in their ability to hold to the truth (good, light, loving, etc.) in situations that break many mens spirits. In fact, they ride, straight into the mouth of darkness to bring the message that Light is still present. We want to hold them up as magical, because we can't see in ourselves, or have not yet learned, how to hold our own space, our own power, our own truths, in the midst of trying times. But the truth is, there is no magic to it. It is a god-given power. Part of life. Part of the tools we must evolve within ourselves.
And it comes back to that light, in the darkness. WE must create it. Call it forth. Some say Winter Solstice is a reminder that light is return to us from somewhere outside of us. I think it is a reminder that even in the darkest times, it will come because we call it up from INSIDE us. If you pay attention, and become very very still, and quiet and listen...you will find the ember to fan, and feed and light WILL come.
Happy Solstice!
Jenna
Monday, December 15, 2008
Surprise Ending
Guess what? Chemo appears to be DONE. Yep, one week early!!!!!! YAY!!!!!!!!!!
This is exciting for me, because I am so drop down drag out tired, getting anything done feels painful because all my body wants to do is lay down lately. So the doc said, she didn't see a pressing need for one last round and gave me an early release! WHOOHOOO!
It looks like the count numbers went up just slightly, but the scans will determine just where we are going to be leaving off. With some small tumors left? Traces left? Nothing left? From the numbers, probably SOMETHING is still lingering. But those numbers are older. So, we just have to wait and see what the scans say. If they are clear, this early release is indefinite.
So what does this all mean?
Today, was my last day of Abraxane. Round #23. This is the chem drug that is killing off the cancer cells.
Next week, I go in for a triple dose of Herceptin. This is a therapy drug that blocks the cancer cells from reproducing. I will be going in every three weeks to get this drug. It won't be as dibiltating as Abraxane, because it isn't killing my good cells. Just stopping the bad ones from reproducing. Wew.
I will also be getting Zometa. This helps block the bone sites from reproducing, and it fortifies the weakened bones. Right now, I have two vertabrae that have been damanged, much like a broken bones, but less clean a break, from the tumor sites.
Finally, since this breast cancer thrives off of Estrogen, we will be shutting down ALL the Estrogen production in my body. Early, and permanent, menopause. I am a little wary of what this is going to do to me. I hope I don't become a hormonal mess that gains 50 more pounds (I have gained 20 from the steriods they give me to control nausea). My body tells me this, more than anything, will help keep that cancer from really going to town.
So, the phase of chemo is over. Now we are onto maintaince and keeping any cancer left in my body in check thought the three therapies listed above.
Emotionally, it is a little challenging. I am stopping what we know is working. But, my body needs to be functional. My body tells me it is time to move on from chemo. So onward we go.
Also, into limbo and being a constant patient from a life threatening disease...for decades if all goes well. But it is always going to be a questions mark. Always lingering there if I let it. I am hoping that once the side effects of the chemo wear off, and my energy returns, I will feel healthy, and this indefinite chronic disease won't feel so scary.
But, for now, I am going to revel in this break from chemo. I am going to SOAK IT UP BABY and just be so grateful for everyday I have that is "normal" health. I am going to breath deeply every single day. I am going to pause, every single day, and feel the grace of living. I am going to love with abandon, never hold onto a grudge, and just let the good that is in the world act like a salve for any "bad" (or momentary amnesia that the heart of all things is good and baeutiful, even if it isn't appearing that way at the time).
I am going to blog. About LIFE. And what inspires me, what makes me want to fight to stay on this earth and experience the fabulous people, mind altering art, and natural beauty of the land. I want to revel in the web of life and its connections.
I like what she wrote in "It's Not About the Hair": She said that as a clergy for people experiencing cancer, she takes hope in people who fight to be here because they love living, not because they fear death.
And finally, my inspiration for the week. Jen Lemen. The picture today is from her Etsy site. She has the most inspiring, heartfelt images, notes, and sayings. She is a really Wizard of Hope and Change. She was gracious enough to give me little extras with my order to hand out to people who needed them. There were MANY grateful and touched hearts today in the chemo rooms, from people who I picked at random (well, intuitively) tor receive these goodies. GREAT christmas ideas. Click on here pic above.
Ahhhhhhhh. Good stuff.
Jenna
Monday, December 8, 2008
Holding Steady
Hello dear ones! After a week of a nasty chest cold, and fatigue so suppressive, I couldn't keep my head up, and onto otc's that cleared it instantly........well, that was quit the rollercoaster. Yet, under it all, I am still feeling like a container filled with light and peace.
My family, seems to be moving in a more gentle way with each other as well. We just seem to be more cuddly and less crusty (you know, auto-pilot and disgruntled-ness do to overt amounts of stress). Crust Busting I have heard it called. Living full out with love and letting things "go with the flow". Reaching outside of comfort zones and habits to make the effort and say "Love you too" without words. So nice.
All this fatigue and sickness squelched plans for holiday merriment. No Phinney Ridge Winter Festival (and visits to dear friends who sold their Wiley Wares and Luma-ntion the night). (They are my inspiration for the week. See sideBARS) My body forced me to rest and rest I did. I needed to save all the energy up for a promise to a 5 year old.
On Sunday, we enjoyed the mindblowing Pacific Northwest Ballet's Nutcracker. The sets were mindblowing, the overall effect, magical. Even then, I wanted to nap during the Dance of the Sugarplum Fairies. But what a magical place to catnap. I woke up wanting candy. Hmmm. lol.
And now, a Zometa week. Last week, was one of the first weeks since the very beginning where I thought "Now it is time to reach out. To help get through these last weeks. I am so tired and I am just not finding the breaks of energy anymore". I am like a Seattle-ite, waiting for "sunbreaks" in winter, only they used to be "energy'-breaks". Still, a peaceful feeling, and sometimes tears when I am SO tired I can't help but get weepy. Not sad. It is weird. Like being pregnant and hormonal. I just let tears slip down my cheeks from fatigue.
So, anyone wanting to help out this week with a run to the library (my books our SO overdue. I keep waiting for my energy to return!). Or a pot of soup would be most welcome. I know I still have many offers. And for awhile, didn't need them. But, it is time again - to ask. I am having a hard time managing much of anything right now. My legs feel like jelly. So, Sharon MIGHT be the person to ask - since brain cells and "keeping up" seem to be turn off right now.
Much love, peace, and cat-purring joy,
Jenna
Tuesday, December 2, 2008
Want to Try an Experiment with Me?
Hello all! If anyone is still reading after that long pause, I appreciate it!
I have a feeling this blog is going to be quieter over the month of December. I am just kind of "done" with cancer. Kind of "done" with talking about it. I have so much I am looking forward to, and so much other stuff starting to brew. I love that I am in a place where my thoughts aren't forced into my body due to pain! I am starting hatch plans for the future, and am starting to feel creative again and doing more. yeah! Even if I die tomorrow (which I am not) I want to celebrate life today!!!!!!!!
All that being said, I am also getting VERY fatigued. It is kind of a brutal curve. As cancer goes away, the line goes down. But the cumlatives effects of chemo go up up up. The type of fatigue has changed. From bone deep, I am going to fall over into a puddle and disappear fatigue and pain, into a "My heart is happy, my spirit is strong, but DAMN my body is so tired, all I can do is get up, get Bug off to school, and then I am forced back to the couch is lay down. I am fatigued!"
Most days, I am not out of my PJ's. The effort it takes to get ready to leave, most days, is all the energy I have, and I end up resting as soon as I am done getting PJs on. 6 months of chemo! Wew! The doctor said usually at 6 months, the good chemo does peaks, and people run out of gas." Yup yup yup.
I do have some good days. But the effects hit me sooner (usually I had till Wednesday before I hit "chemo" land.) Now it is the day of chemo. I used to have the weekends, and now sometimes I do. So, wew!!!!!!!!!!!!!! Getting there. And everyday is different. Hour to hour is what I go by now. I am not some pathetic heap on the couch all day. But the energy I do have goes into creating a stronger body. Like doing Yoga, cleaning, cooking, and then, back to resting.
So friends, if I have been quiet, and not emailing. Know I am thinking of you......and the wild party I am throwing in January, for my birthday/done with chemo party!!!!!!!!!!!!
I have tons of hope. I am so in love with Life. But I am just really tired. And tired of talking about it. Any energy I have is going to go into settling back into our house (some of you might know that we were selling our house, and had moved out much of our stuff and staged the house to sell). Now, I am so excited, my creativity to coming back. And we are setting up downstairs into our office on one side, and a full fledge art studio on the other!!!!! So, spare energy is spent on unpacking, and setting up. It is also being spent on getting ready for the holidays.
But today, I woke up, once again, fatigued. I feel like I am sweating chemicals from my pores. Yuck.
SO, I have a task for you all! I have been doing this myself. We've done this before:
Around Christmas Day, I am DONE with chemo. I then gets another round of scans to see "where" the cancer is.
This is what I want you all to hold in your minds:
Imagine me writing in the blog:
"I am in complete remission!" I want you to FEEL what me telling you that would feel like to you. I want you to believe it CAN be true and then move it into "it IS true, right now!".
Not just remission (the doctor said remission is a holding pattern, not "all clear"). I want you all to imagine me seeing you, and being completely healthy and cancer free. I want you too see my body as fit, glowing, and whole. COMPLETE REMISSION. I want you to celebrate my bodies ability to heal itself completely. There really is NO reason why it can't. Right?! It has happened before. I have a strong, healthy body, that can heal. We all do. I want to infuse this knowledge through every cell of my body. I want the space in between and inside of each cell to be glowing and humming radiance!
Want to try this little experiment with me?
Love to you all!
Jenna
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