paint brushes, yoga mats, and Stage IV Breast Cancer. A "How to Deal" Guide.
Monday, June 30, 2008
Intention for the Day
Today is Chemo Day #2.
So, I would like to set the intention/prayer for today through this blog. As everyone reads it, I believe it gets the energy moving/building towards the intention.
Today is a good day to heal.
Today, I call upon the wisdom of my body, and the wisdom of those who possess healing tools, to join together to heal.
I thank those who've developed the medicines and the skills to administor the medicines that enter my body for they are charged with a sacred task to heal. I thank all those who've done the work before me, doctos and patients, and have brought us to this point where I may now have the opportunity to heal. I fully and open heartedly accept this medicine.
I also accept that my body is an amazing healing tool. Within it, I have the capacity to aid in my own healing. May it take what it needs from the medicine, and focus in on only that which needs to be broken down and transformed into Wholeness and Good Health. My body will allow what is healthy to remain healthy, and aid in the removal of all cancer cells. My body will also heal quickly, because I am young, and strong and have the capacity to regenerate my body at all times. It was made to do just that. I accept the wisdom that came with this body to heal.
I also accept all the love and healing prayers and energy to take this healing to the next level and may those wonderful radiant thoughts and prayers carry me through this process with Ease and Grace.
I finally am delighted to know today, that as all these aspects join together, healing is amplified and radiates through me.
I thank the Universe, that Divine spark that makes us alive, for providing me with such blessed and wonderful opportunities to heal.
And so it is.
Jenna
Saturday, June 28, 2008
THE song
Two sections of this song constantly run through my head. In the elevator on the way to an oncologist, in the PET tube, waking up in the morning. So, I thought I would share the whole song. Click the picture to see the video.
"but you can't kill my spirit, it's a soul and it's strong,
like a mountain I go on and on,
and when my wings are folded,
the brightly colored moth,
blends into the dirt, into the ground."
The kicker is that she came out with a new album called Courage. How appropriate the timing on that one. Of all the music I love, it is Paula's that has carried me through this entire ordeal. Always lines popping up in the midst of stress, pain, joy....kind of like a magic 8 ball, but with songs that answer to the situation.
"I'm walking on the bridge,
I am over the water,
and I'm scared as hell,
but I know there's something better,
yes I know there's something better,
Yes, I know!
Yes, I know!
Yes, I know!"
Rock on Paula!
Jenna
Friday, June 27, 2008
Adaptation
Bug and I had a talk this morning about change and adaptation. I realized upon waking up (and barely being able to walk still) that it might be time to acknowledge we are really going to have to wake up together and look at the day brand new. What can mom do today? What does Bug want to do? How can we be flexible and let go of expectations, and instead look at each moment as the time to decide "What now?" instead of "What's next?". She agreed. She can see how the pain will stop me, even when I want to go. She has been incredibly flexible.
I really have to embrace this fluidity, or sink. I didn't expect to be still so in pain and weak 4 days after treatment. And all my ole standby's for pain relief don't apply really. They must be adapted. Yoga is out, mindfulness is in. Walking the park is out, sitting in the grass in my yard...in. Instead of doing Asana's, ,I do breath work. I move my hand in circles if that is all my body can do...I allow it to express the music in my head through dance...again, even if it is only my wrist and fingers. It is better than sitting in a pool of pity, stalemated with my past and how I "used" to do things. Maybe, if I adapt, I learn new tricks, and then maybe one day, I get to use ALL of them again.
I am foggy. I am on a couple of meds, one a narcotic. So I hope these entries make some sort of sense. It is my best and I am willing to try.
I can say this, this is ALL new to me. Life, a little be richer and deeper.
Your very own space-cadet,
with love,
Jenna
I really have to embrace this fluidity, or sink. I didn't expect to be still so in pain and weak 4 days after treatment. And all my ole standby's for pain relief don't apply really. They must be adapted. Yoga is out, mindfulness is in. Walking the park is out, sitting in the grass in my yard...in. Instead of doing Asana's, ,I do breath work. I move my hand in circles if that is all my body can do...I allow it to express the music in my head through dance...again, even if it is only my wrist and fingers. It is better than sitting in a pool of pity, stalemated with my past and how I "used" to do things. Maybe, if I adapt, I learn new tricks, and then maybe one day, I get to use ALL of them again.
I am foggy. I am on a couple of meds, one a narcotic. So I hope these entries make some sort of sense. It is my best and I am willing to try.
I can say this, this is ALL new to me. Life, a little be richer and deeper.
Your very own space-cadet,
with love,
Jenna
Thursday, June 26, 2008
Post Chemo Crash Day 2
So, after talking to my oncologist, Taxol can hit 36 hours after the administration and take about 24 hours to pass/peak. That peak hit yesterday afternoon around 4:00. Dear God. But it was good to know it would pass that peak point and not stay there forever.
Today, joints hurt I didn't even know I had! Someone please get the license plate number of the truck that hit me?
While I feel, I think, the worst I have ever felt in my life, it is indeed passing. Wew. It helps to Zen into it and pray. It is the only way at some points.
And this is the "easy" stuff. I have so much empathy for the harder hitting chemo drugs and the people who take them. They deserve a badge of courage.
The worst for this week is over. Now recoup. And learn. Learn how to rest, eat, and do the dance around the chemo days to make the post days go easier. My oncologist said that is the way it goes. You experience it, then adapt. Much like life.
So for today, my super-chemo-ninja-badge looks something like this:
---------------------------
The following info was added Oct. 14th as a FOLLOW UP. I see from my dashboard to this site, that the number one referral from goggle to this blog is if people search for "Chemo Crash." I top this the list. So I would like to add the following information - in case you don't read beyond this one entry.
It turns out that I had an allergic reaction to Taxol. (see here for that entry) Which explains why it was such a hard crash afterwards. I know a dear friend of mine, on Taxol, who had VERY little issues with Taxol. So please, one of the most important things to know with chemo - is that EVERYBODY REACTS DIFFERENTLY. If you are having a nasty ride, I would HIGHLY recommend two things:
1) Finding a good acupunsturist who works with chemo patients. This alone will control side effects. I have seen this again and again. Anyone I know who lived FAR beyond their life expectancy did two things, found peace everyday, and did acupuncture. I had more people refer me to acupuncturists "their other friend who survived cancer", than any other CAM medicine.
2) Try hypnotherapy. I have a personal hypnotherapist, and I have a CD (see sidebar). Within hypnotherapy, we have created a control board, that allows me to create dials as needed. Pain? I create a nob and turn the number from 8 to 7, to 6, to 5 etc. White blood cells dropping? I create a nob, and turn it from 4.0 to 6.5. Just a quick note, my white blood cells have NEVER dropped below 4.1!!! And usually average 6.0 with peaks in the 7's!!!!!!!!!
If you are about to embark on your journey with Taxol, please do not EXPECT this horrible side effect reaction. It is highly unlikely. It was probably the allergy to the base the put Taxol in that did the harm. (see that blog entry here) But, again, please look into Alternative Therapies to help control side effects!!! My reaction was an allergy to the base they put Taxol drugs in to administer them.
This leads me to one last note on Taxol. I ended up switching from Taxol to Arbraxane. Abraxane has the same drugs in it as Taxol, but the base they put it in is different. It is some sort of human protein or something, so it is not foreign to the human body and has very little side effects. HOWEVER, the cost....went from around $30,000 on Taxol, to $50,000 for the Abraxane. EACH AND EVERY TIME I GET IT. NOT OVERALL!!!!! EACH DOSE!!!!!! This point always stuns people. I think I see their minds go >boom!<. Yes, each dose costs $50,000.
Now, for all of you freaking out, Insurance give In network a huge discount, and we only pay %10 after that til we hit our overall cap. But you should know, it takes a serious life threatening reaction to get put on Abraxane because of the expense. So, "regular" side effects won't get the switch. I am sorry if you are having a rougher ride, but don't expect to pay for the Abraxane out of pocket.
--------------------------------------------------
Okay, off to rest.
HUGS
Jenna
Today, joints hurt I didn't even know I had! Someone please get the license plate number of the truck that hit me?
While I feel, I think, the worst I have ever felt in my life, it is indeed passing. Wew. It helps to Zen into it and pray. It is the only way at some points.
And this is the "easy" stuff. I have so much empathy for the harder hitting chemo drugs and the people who take them. They deserve a badge of courage.
The worst for this week is over. Now recoup. And learn. Learn how to rest, eat, and do the dance around the chemo days to make the post days go easier. My oncologist said that is the way it goes. You experience it, then adapt. Much like life.
So for today, my super-chemo-ninja-badge looks something like this:
---------------------------
The following info was added Oct. 14th as a FOLLOW UP. I see from my dashboard to this site, that the number one referral from goggle to this blog is if people search for "Chemo Crash." I top this the list. So I would like to add the following information - in case you don't read beyond this one entry.
It turns out that I had an allergic reaction to Taxol. (see here for that entry) Which explains why it was such a hard crash afterwards. I know a dear friend of mine, on Taxol, who had VERY little issues with Taxol. So please, one of the most important things to know with chemo - is that EVERYBODY REACTS DIFFERENTLY. If you are having a nasty ride, I would HIGHLY recommend two things:
1) Finding a good acupunsturist who works with chemo patients. This alone will control side effects. I have seen this again and again. Anyone I know who lived FAR beyond their life expectancy did two things, found peace everyday, and did acupuncture. I had more people refer me to acupuncturists "their other friend who survived cancer", than any other CAM medicine.
2) Try hypnotherapy. I have a personal hypnotherapist, and I have a CD (see sidebar). Within hypnotherapy, we have created a control board, that allows me to create dials as needed. Pain? I create a nob and turn the number from 8 to 7, to 6, to 5 etc. White blood cells dropping? I create a nob, and turn it from 4.0 to 6.5. Just a quick note, my white blood cells have NEVER dropped below 4.1!!! And usually average 6.0 with peaks in the 7's!!!!!!!!!
If you are about to embark on your journey with Taxol, please do not EXPECT this horrible side effect reaction. It is highly unlikely. It was probably the allergy to the base the put Taxol in that did the harm. (see that blog entry here) But, again, please look into Alternative Therapies to help control side effects!!! My reaction was an allergy to the base they put Taxol drugs in to administer them.
This leads me to one last note on Taxol. I ended up switching from Taxol to Arbraxane. Abraxane has the same drugs in it as Taxol, but the base they put it in is different. It is some sort of human protein or something, so it is not foreign to the human body and has very little side effects. HOWEVER, the cost....went from around $30,000 on Taxol, to $50,000 for the Abraxane. EACH AND EVERY TIME I GET IT. NOT OVERALL!!!!! EACH DOSE!!!!!! This point always stuns people. I think I see their minds go >boom!<. Yes, each dose costs $50,000.
Now, for all of you freaking out, Insurance give In network a huge discount, and we only pay %10 after that til we hit our overall cap. But you should know, it takes a serious life threatening reaction to get put on Abraxane because of the expense. So, "regular" side effects won't get the switch. I am sorry if you are having a rougher ride, but don't expect to pay for the Abraxane out of pocket.
--------------------------------------------------
Okay, off to rest.
HUGS
Jenna
Wednesday, June 25, 2008
Chemo Crash Day - UGH
Quick note, typed with shakey fingers. Having a hard post-chemo day. Apparently, from talking to the nurse, it can kind of take a day or two to hit you. Apparently, that is what is going on. I am shakey, weak, naseau, no appetite. How am I ever going to do this with no family in town? AH!
Gotta work out something soon if this is what the ride is going to be like somedays.
Feeling groggy and down a bit today. But have some wonderful collaging on the floor promising me something great when this wave of chemo passes.
Jenna
Tuesday, June 24, 2008
Chemo Day Catch Up
So, my first round of chemo was yesterday. :) I was so excited to get in there and get the healing happening. Even in the month of testing and getting it all going, I can feel it's progression some. So, VERY happy to start turning the tides towards healing and feeling confident in our decision/path of action.
Very good news is it went smoothly!! No reactions to the Taxol or the Herceptin. The Taxol can have some issues, luckily, none of those applied to me. I had no nausea, no real anything odd going on. I even had enough energy to get my mother-in-law and me to a grocery store. We SO took our time and didn't push anything. And I came home just tired enough to know it was time to call it quits and lay down for the day.
Eating some YUM split pea soup and rice that Anna Katherine made (THANKS BY THE WAY! So sorry I missed you dropping it off!) And I am feeling all cozy and cared for.
So, the big fear of "what will this do to me?" is out of the way. And as Sharon so pefectly put in any email:
"Congrats! Tonight you are slightly more cancer free than you were earlier today! :-) "
So perfect that was the first thing I read today!! And I leave you all with that for now.
Jenna
Very good news is it went smoothly!! No reactions to the Taxol or the Herceptin. The Taxol can have some issues, luckily, none of those applied to me. I had no nausea, no real anything odd going on. I even had enough energy to get my mother-in-law and me to a grocery store. We SO took our time and didn't push anything. And I came home just tired enough to know it was time to call it quits and lay down for the day.
Eating some YUM split pea soup and rice that Anna Katherine made (THANKS BY THE WAY! So sorry I missed you dropping it off!) And I am feeling all cozy and cared for.
So, the big fear of "what will this do to me?" is out of the way. And as Sharon so pefectly put in any email:
"Congrats! Tonight you are slightly more cancer free than you were earlier today! :-) "
So perfect that was the first thing I read today!! And I leave you all with that for now.
Jenna
Monday, June 23, 2008
What's cool to a healing cancer chick
Chemo Day + Help List
Hi all! Per request, I have added a sidebar on current help needs. It is by no means a complete list.
But someone told me they would be happy to _____, but they weren't sure if it had been done yet or not. So, I made the handy dandy sidebar. It will dissappear once it has been snagged for the doing.
And, today is Chemo Day #1. My mood is ready. I had a shady weekend, of feeling sad, and now I am feeling ready.
Also, if you are on the helping list, can you please send you snail mail to Sharon. I promise not to sell it to a twisted company for profit. ;) lol.
Send the PEACE vibes today. Goal today little to no nerves!!!
Jenna
But someone told me they would be happy to _____, but they weren't sure if it had been done yet or not. So, I made the handy dandy sidebar. It will dissappear once it has been snagged for the doing.
And, today is Chemo Day #1. My mood is ready. I had a shady weekend, of feeling sad, and now I am feeling ready.
Also, if you are on the helping list, can you please send you snail mail to Sharon. I promise not to sell it to a twisted company for profit. ;) lol.
Send the PEACE vibes today. Goal today little to no nerves!!!
Jenna
Friday, June 20, 2008
Monday is lurking in my head. I tell myself "Be present now", but I also honor it popping up in my head. Chemo is not a thing to start lightly and I somewhat mourn the loss of my body....or the seeming control of my body. I hope and pray I make it out the other side, free of chemo, and having a life of energy and ease again.
I am practicing acceptance that my life won't ever look the same again. It will look radically different in ways that are exciting and easy to accept (ie, a new perspective on life, an ease in relationships, and deepening patience with the little things that once consumed my day). But also in ways I fear (ie, never being disease free, the chemo not helping, and darker places I don't wish to entertain fully).
I really have to work on letting go of thinking of chemo as poisoning my body. Not a good way to start off my best bet at getting some of my health back. I have to trust that the damage it does to save my life can also be healed once it is done damaging the cancer. Fear, fear, fear. It is like a dance. You don't deny it and stuff it down, and you don't let it consume you.
In Crazy, Sexy, Cancer, one tip is "The Three Day Rule". Let yourself "go there" for no more than three days. Past that it is wallowing. Feeling it good, wallowing in it bad.
Many many many people ran off this weekend to vacation and frolick. Quiet down time.
Love to all,
Jenna
Wednesday, June 18, 2008
Imagination and Lack of Information
So, from talking to some of you directly, I can't imagine what it must be like. I know my body, I can feel what is going on, I get the information and decide what to share. You have to fill in the blanks.
And you imaginations are probably far worse than the reality.
I am reading this book called "Crazy, sexy, cancer tips". In it, there is a side box that says:
"Dear friends...Don't ask me how long the doctors have given me! (clip) I say, 'I don't know, how long have the given you?"
Really, when you get to stage four, I think it is a good a guess as anyones. Especially when you aren't showing signs of keeling over the next day. Some people defy the odds, and live for a decade, some people suddenly and rapidly decline. Why? Who knows. If I know I keeling over sometime soon, I will let you all know. Really. My doctor said she would, and I will tell you as well.
Right now, things look hopeful. I am going to start chemo and a drug that has shown REMARKABLE ability to stop cancer in its tracks. 75% chance it will stop it, or at least really slow it down, and the chemo will help clear it out. It is what my friend has done, and she is ALL CLEAR!!!!!!!!!
If it doesn't work, I will tell you. It STILL doesn't mean I am leaving tomorrow. I could be like the curmudgeons I heard about in PET, he is around, for no explainable reason, 7 years after being told her would die. I could get hit by a truck on my way to chemo. I have given up thinking I can control my death.
Do yourselves a favor, and let go of the idea that we can be predictable. We can't. It makes us ALIVE to be unpredictable. ;)
LOVING HUGS
Jenna
And you imaginations are probably far worse than the reality.
I am reading this book called "Crazy, sexy, cancer tips". In it, there is a side box that says:
"Dear friends...Don't ask me how long the doctors have given me! (clip) I say, 'I don't know, how long have the given you?"
Really, when you get to stage four, I think it is a good a guess as anyones. Especially when you aren't showing signs of keeling over the next day. Some people defy the odds, and live for a decade, some people suddenly and rapidly decline. Why? Who knows. If I know I keeling over sometime soon, I will let you all know. Really. My doctor said she would, and I will tell you as well.
Right now, things look hopeful. I am going to start chemo and a drug that has shown REMARKABLE ability to stop cancer in its tracks. 75% chance it will stop it, or at least really slow it down, and the chemo will help clear it out. It is what my friend has done, and she is ALL CLEAR!!!!!!!!!
If it doesn't work, I will tell you. It STILL doesn't mean I am leaving tomorrow. I could be like the curmudgeons I heard about in PET, he is around, for no explainable reason, 7 years after being told her would die. I could get hit by a truck on my way to chemo. I have given up thinking I can control my death.
Do yourselves a favor, and let go of the idea that we can be predictable. We can't. It makes us ALIVE to be unpredictable. ;)
LOVING HUGS
Jenna
One Day at a Time
It is crazy to wake up and go "I could live 3 months, or I could live 20 years." I have heard the range of stories. Stories that match mine.
Decision time. How do I want to spend the time I have (wether it be 3 months or 20 years).
But then again, shouldn't we all be asking that? I mean SERIOUSLY asking that...every single day? It is SO easy to skip that question on our "normal" days.
Everybody seems to have a guess. Every doctor seems to have the "tone" about it. I like their new term "we see this as a chronic disease" (insert in the blank spot- which we have no idea how long you will live or how the drugs will take, we are just making our best educated guess, just like you are)
In the end, that leaves me and only me to decide, because it seems like guessing games. 2 years, 20 years? Spent in a chemo stupor? Or clear headed for 6 months?
The reality that each and every day and how I want to live it are TRULY up to ME and only ME is pure and utter freedom.
Scarey as hell, and the most enlighting moment I have ever had.
Live well today
Jenna
(the artist to the right is one of my all time favorites. Niki McClure. Click to see more)
Tuesday, June 17, 2008
Daily Prayers
Every morning, I wake up and the very first thought I have is:
Today is a good day to heal.
Then I say this intention (brought to me by Susan):
Today, I committ myself fully to healing and trust fully in my body wisdom to lead me to those people and things that will lead to my healing.
And I feel this soak through my body into every cell. I do this before I let my feet touch the ground.
It is a good way to start a day.
The day off was good for me. I needed to re-energize.
I got a KICK ass wig, and a pedicure (that the technician lovingly let me sleep through!) and got the evening with Bug to read read read.
I may be waiting to start chemo til Monday. I have too many questions, and need a few more pieces of the support structure under me before I start to challenge my system. From talking to the docs, the few days should't hurt and only give me more confidence in having the tools lined up to heal.
My port is healing up well. Instead of sore, I now feel this crazy little thing sitting under my skin. SO weird. But after looking at my beat up arms, I am grateful for this device in the future! No more IV's for blood draws, and meds can go in there, instead of in my arms. Wew!
For those wishing to help:
- We have a nasty yard that is in dire need of being declared a buttercup national monument, or being mowed ;)
- We have SO gratefully eaten through the delicious meals that have been provided.
- If anyone is heading to Target, I have a few requests.
Okay, night all!
Blessings!
Jenna
Today is a good day to heal.
Then I say this intention (brought to me by Susan):
Today, I committ myself fully to healing and trust fully in my body wisdom to lead me to those people and things that will lead to my healing.
And I feel this soak through my body into every cell. I do this before I let my feet touch the ground.
It is a good way to start a day.
The day off was good for me. I needed to re-energize.
I got a KICK ass wig, and a pedicure (that the technician lovingly let me sleep through!) and got the evening with Bug to read read read.
I may be waiting to start chemo til Monday. I have too many questions, and need a few more pieces of the support structure under me before I start to challenge my system. From talking to the docs, the few days should't hurt and only give me more confidence in having the tools lined up to heal.
My port is healing up well. Instead of sore, I now feel this crazy little thing sitting under my skin. SO weird. But after looking at my beat up arms, I am grateful for this device in the future! No more IV's for blood draws, and meds can go in there, instead of in my arms. Wew!
For those wishing to help:
- We have a nasty yard that is in dire need of being declared a buttercup national monument, or being mowed ;)
- We have SO gratefully eaten through the delicious meals that have been provided.
- If anyone is heading to Target, I have a few requests.
Okay, night all!
Blessings!
Jenna
Feeling, well, just in kind-uh-a-funk
From the bits and pieces I can glean, this blog might be making information worse. Hmm. Getting parts and pieces. I am considering a website the American Cancer Society Rep. recommended call "Caring Bridge". It has a few more advantages than the standard blog.
- It would email notify you every time I put in an entry.
- There is a dedicated guestbook
- Photo gallery
- suppose to have a calendar, but in the meager attempt I have made to find it, cannot.
The stresses of all the tests are catching up to us both today. My arms look like a battle ground of holes and bruises. Today, I joke I was "drugged, mugged, and tatooed".
DRUGGED - I had another radioactive isotope test looking at my heart function. I always leave those radioactive tests feeling gunked up and "thick".
MUGGED - the heart test is called a Mugga. They do it to make sure your heart can handle the chemo, they also use it as a baseline to check later that the chemo isn't damaging my heart "too much". Hmm.
Tattooed - I was put through a CT scan of my spine where the cancer is (two vertebra) and then tattooed so when they do radiation, they know how to line me up each time quickly. (hmmm, pink hair, tatooed, I just need the nose ring for my complete transformation! hehe)
I also spend 30 minutes getting yet ANOTHER IV, and laying facedown in a contraption that pounding sound through my breasts to image them. I am SO glad I took the relaxing drug at the point. My day started a 10:00, CT (machine broke down), MUGGA (the leads weren't working and I sat squished in a machine while they figured out if it was my heart, or their machines not working - it was the latter), wigged in a BAD, but free, wig, and then heading to an MRI at 4:00. I was very fragile physically by the end of all of that. Even if it doesn't feel stressful, it is stressful nonetheless on the body.
I think my other fragility going on is knowing the testing is now done. It is time to do "the work". My life feels like it has already been shattered and I have the last hurrah as "Jenna as I understood her to be" tomorrow. After this, we hope it works, my hair comes back in differently, I enter early menopause, my taste buds go for awhile, may become anoreic. Yet, I feel this big shift in my self concept is needed to heal. To peel away that which wasn't working.
Some of you said, "This is all happening so rapidly". Yep. When it sits on your vertebra, and causes you problems breathimg. walking, driving, etc, because of pain and weakness, it is time to move. It has gone far enough, I need the peace of mind that we will probably be able to stop its spread.
I haven't given ALL the info on this website. Because it just has all shifted and changed so quickly. So what appears like spotty info, probably isn't as spotty as you think.
I do have a few last chemo questions to ask about, tomorrow.
But tomorrow is my NO APPOINTMENTS DAY! My last day to lay in the sun for a long time. I am going to chill, get my pedicure while I still can, and get my good wig. It will probably be a week or two more of having my hair.
Getting sleepy again.
Night all
Jenna
- It would email notify you every time I put in an entry.
- There is a dedicated guestbook
- Photo gallery
- suppose to have a calendar, but in the meager attempt I have made to find it, cannot.
The stresses of all the tests are catching up to us both today. My arms look like a battle ground of holes and bruises. Today, I joke I was "drugged, mugged, and tatooed".
DRUGGED - I had another radioactive isotope test looking at my heart function. I always leave those radioactive tests feeling gunked up and "thick".
MUGGED - the heart test is called a Mugga. They do it to make sure your heart can handle the chemo, they also use it as a baseline to check later that the chemo isn't damaging my heart "too much". Hmm.
Tattooed - I was put through a CT scan of my spine where the cancer is (two vertebra) and then tattooed so when they do radiation, they know how to line me up each time quickly. (hmmm, pink hair, tatooed, I just need the nose ring for my complete transformation! hehe)
I also spend 30 minutes getting yet ANOTHER IV, and laying facedown in a contraption that pounding sound through my breasts to image them. I am SO glad I took the relaxing drug at the point. My day started a 10:00, CT (machine broke down), MUGGA (the leads weren't working and I sat squished in a machine while they figured out if it was my heart, or their machines not working - it was the latter), wigged in a BAD, but free, wig, and then heading to an MRI at 4:00. I was very fragile physically by the end of all of that. Even if it doesn't feel stressful, it is stressful nonetheless on the body.
I think my other fragility going on is knowing the testing is now done. It is time to do "the work". My life feels like it has already been shattered and I have the last hurrah as "Jenna as I understood her to be" tomorrow. After this, we hope it works, my hair comes back in differently, I enter early menopause, my taste buds go for awhile, may become anoreic. Yet, I feel this big shift in my self concept is needed to heal. To peel away that which wasn't working.
Some of you said, "This is all happening so rapidly". Yep. When it sits on your vertebra, and causes you problems breathimg. walking, driving, etc, because of pain and weakness, it is time to move. It has gone far enough, I need the peace of mind that we will probably be able to stop its spread.
I haven't given ALL the info on this website. Because it just has all shifted and changed so quickly. So what appears like spotty info, probably isn't as spotty as you think.
I do have a few last chemo questions to ask about, tomorrow.
But tomorrow is my NO APPOINTMENTS DAY! My last day to lay in the sun for a long time. I am going to chill, get my pedicure while I still can, and get my good wig. It will probably be a week or two more of having my hair.
Getting sleepy again.
Night all
Jenna
Sunday, June 15, 2008
The Pixie Cut
Okay, okay. Finally!
I am adjusting. Bug cried, Candida loved it, and Jim said he "really really like the way it shows off my eyes".
But don't get toooooooooo used to it, for soon it will be gone ;)
Speaking of. Any of my crafty girls want to help make some kick ass caps for my soon to be shiney head? Knit, scarf, etc?
Night all!
Quick Update
Friday I had my portacath (sp?) put in. I wasn't expecting it to be such a big deal, but, two days later I am finally more awake and in less pain. One little trip to the ER yesterday to double check they didn't puncture a lung, and back home I came.
I am LOVING the sun that has finally come back to Seattle, and have good energy back today. I am still tired, but I am move better and am not in the haze of pain killers and the anesthesia.
It is nice to have a quiet day, of no appointments or running. I am just sleeping and listening to Mimi and Bug play together and sleeping some more. VERY nice.
And I will be getting my new hairdo posted tonight. SO many requests to see it! It is very short, and after surgery, I just wanted to shave it off like Sinead Oconner. Hmmmmm. still might. Feels very empowering not to have this tangle of hair. It also helped me to see how much ego is wrapped up in a hairstyle!
Okay, just a quick update. I am going to relax and enjoy this quiet day.
NEXT UP:
Muga
Radiology consult
Radiology planning - (they ct my spine and tattoo the radiation plan on my back)
ND appointments
liver biopsy
wigs
chemo on Wednesday. Wew.
I am LOVING the sun that has finally come back to Seattle, and have good energy back today. I am still tired, but I am move better and am not in the haze of pain killers and the anesthesia.
It is nice to have a quiet day, of no appointments or running. I am just sleeping and listening to Mimi and Bug play together and sleeping some more. VERY nice.
And I will be getting my new hairdo posted tonight. SO many requests to see it! It is very short, and after surgery, I just wanted to shave it off like Sinead Oconner. Hmmmmm. still might. Feels very empowering not to have this tangle of hair. It also helped me to see how much ego is wrapped up in a hairstyle!
Okay, just a quick update. I am going to relax and enjoy this quiet day.
NEXT UP:
Muga
Radiology consult
Radiology planning - (they ct my spine and tattoo the radiation plan on my back)
ND appointments
liver biopsy
wigs
chemo on Wednesday. Wew.
Thursday, June 12, 2008
Jenna's Journey
With some pain meds, food in my belly, and some sleep, my energy is definetly rising again. The initial shock and numbness are giving way to renewed energy to face this again.
Tomorrow, I go into surgery to get a device that sits under my skin and takes the chemo. To celebrate (?????) I am going in tonight to get a crop cut. For one, I can't keep up with this long hair right now. I am too tired and busy to blow dry and style. But also, to help adjust to my impending turn at being a baldy for awhile. So, I figure, I should have some fun. I might dye it a fun color or
streak it pink. I don't know yet. I have good energy and no plans tonight. So, off I go.
Asked lots of questions today between two doctors, and have a clearer understanding of where all this is hiding out (or not hiding) and what the plan is and why. I started to hear more about turning the cancer as much as possible, and then holding it steady, possibly for years! Nothing is guaranteed, but I think the plan sounds solid.
Going to read up more on side effects, and get an ND and nutriontist on board to help keep me as healthy as possible and energy good through it. The type of chemo I am getting is suppose to be very low on the nausea scale. Wew. Again, person to person.
One more little unexpected finding to learn more about. It appears I have two types of tumors in my breasts. Which one matastized? That is the question. Find out next week. Liver biopsy.
The doc also wants me to talk to a patient he has had for five years. She was in my boat, and is still here and doing very well. I REALLY needed that. Cool.
AND - THE SUN FINALLY CAME OUT IN SEATTLE!!!!!!!!!!!!!! It has been winter for weeks. WEW!
Blessings,
Jenna
Tomorrow, I go into surgery to get a device that sits under my skin and takes the chemo. To celebrate (?????) I am going in tonight to get a crop cut. For one, I can't keep up with this long hair right now. I am too tired and busy to blow dry and style. But also, to help adjust to my impending turn at being a baldy for awhile. So, I figure, I should have some fun. I might dye it a fun color or
streak it pink. I don't know yet. I have good energy and no plans tonight. So, off I go.
Asked lots of questions today between two doctors, and have a clearer understanding of where all this is hiding out (or not hiding) and what the plan is and why. I started to hear more about turning the cancer as much as possible, and then holding it steady, possibly for years! Nothing is guaranteed, but I think the plan sounds solid.
Going to read up more on side effects, and get an ND and nutriontist on board to help keep me as healthy as possible and energy good through it. The type of chemo I am getting is suppose to be very low on the nausea scale. Wew. Again, person to person.
One more little unexpected finding to learn more about. It appears I have two types of tumors in my breasts. Which one matastized? That is the question. Find out next week. Liver biopsy.
The doc also wants me to talk to a patient he has had for five years. She was in my boat, and is still here and doing very well. I REALLY needed that. Cool.
AND - THE SUN FINALLY CAME OUT IN SEATTLE!!!!!!!!!!!!!! It has been winter for weeks. WEW!
Blessings,
Jenna
Wednesday, June 11, 2008
Always ask
Hello friends!
My mood is so much better today. Some good sleep, appetite returned (and food eaten!!) and getting to do some of my own de-stressing techniques has put some energy back into me. It is so easy just to get overwhelmed and it is important to not stay there. I will always keep that in mind and do the things that bring me back to my center. SO important right now.
I also wanted everyone to know, if you have questions about anything, call and ask. Or email and ask. It may take me a day or two to reply, maybe not. Your emails and phonecalls have gone a long way in helping me stay sane. No question is a bad question, and some of you questions help me go "Oh, goooood question, I better ask that one myself!" Don't feel shy about overwhelming me. If I am in overwhelmed mode, I simply wont' check email or pick up the phone at that moment. You can even post them here.
Heck, post "thinking of you" replies here. I check them. And they really really really do help at hard moments. A few emails have made it into my "cancer folder" that I am keeping track of all these appointments in. They really lift me up.
I did finally get some great news today, that it appears my brain is cancer free!!!!!! After all of the "it is here, here, here and here" I can't tell you how happy I was. It gave me renewed energy.
I don't feel like "I" am lost. My body is slowed down, in some pain, and quick to tire, but still, Jenna is in here :)
I am still on a list of diagnostic procedures. Spine tomorrow, heart & liver tests to make sure they can handle the chemo. And I am compiling questions. I do feel like I am getting information in pieces and now it is time to bring it ALL together. All this is like shifting wind and we are a little boat.
Bug and I tried on "chemo hats" and scarves today. She giggled and plans to steal them. She said she thinks I will look really silly without any hair. I agreed. Love that kid. Then she curled up with me and we watched a movie together. She just keeps giving me tons of kisses and nuzzles.
Night all,
Jenna
My mood is so much better today. Some good sleep, appetite returned (and food eaten!!) and getting to do some of my own de-stressing techniques has put some energy back into me. It is so easy just to get overwhelmed and it is important to not stay there. I will always keep that in mind and do the things that bring me back to my center. SO important right now.
I also wanted everyone to know, if you have questions about anything, call and ask. Or email and ask. It may take me a day or two to reply, maybe not. Your emails and phonecalls have gone a long way in helping me stay sane. No question is a bad question, and some of you questions help me go "Oh, goooood question, I better ask that one myself!" Don't feel shy about overwhelming me. If I am in overwhelmed mode, I simply wont' check email or pick up the phone at that moment. You can even post them here.
Heck, post "thinking of you" replies here. I check them. And they really really really do help at hard moments. A few emails have made it into my "cancer folder" that I am keeping track of all these appointments in. They really lift me up.
I did finally get some great news today, that it appears my brain is cancer free!!!!!! After all of the "it is here, here, here and here" I can't tell you how happy I was. It gave me renewed energy.
I don't feel like "I" am lost. My body is slowed down, in some pain, and quick to tire, but still, Jenna is in here :)
I am still on a list of diagnostic procedures. Spine tomorrow, heart & liver tests to make sure they can handle the chemo. And I am compiling questions. I do feel like I am getting information in pieces and now it is time to bring it ALL together. All this is like shifting wind and we are a little boat.
Bug and I tried on "chemo hats" and scarves today. She giggled and plans to steal them. She said she thinks I will look really silly without any hair. I agreed. Love that kid. Then she curled up with me and we watched a movie together. She just keeps giving me tons of kisses and nuzzles.
Night all,
Jenna
Forgot my titles again...blah....uhm...UPDATE
Once again, I have to start out this blog by pouring out the gratitude for everyone's messages of belief in me, the practical support, friendship, inspiration. I did a collage awhile back. I will have to scan and post it. It is of a man, diving backwards from the stars, and below him in the dark abyss, are a circle of men stretching out their hands to catch him. That image just keeps popping to mind everytime I think of this wonderful support that is allowing just to relax into this process because I know I have people not only watching, but actively reaching out their hands to catch me. Again, I am honored.
Now, onto the physical update:
Because the cancer has spread to so many places, it appears our shift in care is refocusing on stopping it spreading anymore, possibly getting some of it to diminish (I am unclear here and need to talk to the medical oncologist her intentions) and then holding it in remission with drugs.
Radiation will help get the veterbra (yes, I have a site on a vertabrae) to remain stable and intact and end the pain I have been experiencing. THAT would be great. If I sneeze, I am on the floor cussing. So, yes, I will be doing radiation if it will help the pain go away!
I start chemo next week, and trying to plan the start of radiation soon as well. So, be prepared for baldy ;) I plan to henna my head if I am allowed! hehehehe. I may also go get a short haircut and dye it purple or something crazy I have always wanted to try. But I will at least cut it short.
This week, I have a few more tests to peek into my body to see if it has spread where they haven't yet checked.
Good news is, the cancer cells are very likely to respond very well to a newer drug out there, that will stop them from growing so rapidly (maybe stop them?? Not sure).
So still gathering information, SO much to go through and understand.
I know some of you have taken this hard. One person I talked to, it took days for her to call. She was afraid her saddness would upset me. But instead, our conversation gave me such a surge of strength that I really needed on a bad day. Thanks dear friend.
Okay, going to go shower. Having a good day. Finally able to eat (managing stress better) and that has given me back some good energy.
Jenna
Now, onto the physical update:
Because the cancer has spread to so many places, it appears our shift in care is refocusing on stopping it spreading anymore, possibly getting some of it to diminish (I am unclear here and need to talk to the medical oncologist her intentions) and then holding it in remission with drugs.
Radiation will help get the veterbra (yes, I have a site on a vertabrae) to remain stable and intact and end the pain I have been experiencing. THAT would be great. If I sneeze, I am on the floor cussing. So, yes, I will be doing radiation if it will help the pain go away!
I start chemo next week, and trying to plan the start of radiation soon as well. So, be prepared for baldy ;) I plan to henna my head if I am allowed! hehehehe. I may also go get a short haircut and dye it purple or something crazy I have always wanted to try. But I will at least cut it short.
This week, I have a few more tests to peek into my body to see if it has spread where they haven't yet checked.
Good news is, the cancer cells are very likely to respond very well to a newer drug out there, that will stop them from growing so rapidly (maybe stop them?? Not sure).
So still gathering information, SO much to go through and understand.
I know some of you have taken this hard. One person I talked to, it took days for her to call. She was afraid her saddness would upset me. But instead, our conversation gave me such a surge of strength that I really needed on a bad day. Thanks dear friend.
Okay, going to go shower. Having a good day. Finally able to eat (managing stress better) and that has given me back some good energy.
Jenna
Tuesday, June 10, 2008
PRACTICAL HELP
We are in need of some groceries. If anyone is going grocery shopping tomorrow, and can pick up a few things, let me know in an email.
Jenna
Jenna
Monday, June 9, 2008
PRACTICAL HELP/UPDATE/JENN' JOURNEY
Okay, so I already forgot my little tags that describe each kind of entry. Close enough.
So, we seem all good for childcare and food for a few days easy. Maybe, Thursday and Friday will be more filled than I expected and we will need help then as well.
UPDATE:
We are looking like we are going to be starting treatments sooner rather than later. I did get some good information back today. Not "yeah, this will be easy", but "okay, one step at a time."
And that is about all I am going to tell you right now. Let's just say, it isn't in one spot, and the docs have a plan and we are going to be taking care of it the best we all know how. I feel relief, all this fatigue and pain I have been in, well, at least I know why and there just might be something we can do about it.
On the wall of the nurses office today was a cartoon that had a little girl on the doctors table and a doc saying "We can't say if it is an owie, or booboo. It's to soon to tell, we need to run more tests." It made me laugh really hard. I needed that.
Hard day. Lots of quick decisions to be made this week. So send lots of steady grace energy my way as we make our decisions on what to do.
Peace,
Go love someone,
Jenna
So, we seem all good for childcare and food for a few days easy. Maybe, Thursday and Friday will be more filled than I expected and we will need help then as well.
UPDATE:
We are looking like we are going to be starting treatments sooner rather than later. I did get some good information back today. Not "yeah, this will be easy", but "okay, one step at a time."
And that is about all I am going to tell you right now. Let's just say, it isn't in one spot, and the docs have a plan and we are going to be taking care of it the best we all know how. I feel relief, all this fatigue and pain I have been in, well, at least I know why and there just might be something we can do about it.
On the wall of the nurses office today was a cartoon that had a little girl on the doctors table and a doc saying "We can't say if it is an owie, or booboo. It's to soon to tell, we need to run more tests." It made me laugh really hard. I needed that.
Hard day. Lots of quick decisions to be made this week. So send lots of steady grace energy my way as we make our decisions on what to do.
Peace,
Go love someone,
Jenna
Saturday, June 7, 2008
JENNA'S JOURNEY - #1
SO as part of this healing network, please keep this in mind:
I am not my 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
I am not my 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
Friday, June 6, 2008
Humbled and in Awe of You
So, finally, to the new blog.
First of all. I am so humbled, touched, in awe...of the profound generosity of the community around me. I just wish I could hold up a mirror that caught the beauty of the people surrounding me, so everyone could see. It isn't just what you are doing, but the look in your eyes, and the energy you are giving off is so free and compassionate.
I think it would look like a beautiful crystal, catching every color in it's purist form. I am honored to have such wonderful people around me in my life. I just wish everyone could see this. Thank you all so very very much. If kindness is a cure, I should be healed in about a day's time. :)
I have decided I am going to write this blog in three ways:
Updates on the health front:
Started my series of testing to see how far this has spread. No answers yet. Just tests. I should be glowing in the dark here pretty soon! When you enter a room that has a radioactive warning sign on it, and a lady puts an IV in your vein...well, you take a deep breath and laugh about your newfound "glow". Yes, I laughed a lot.
And talked a good bit with the nurse and technician. Interestingly, we ended up talking about holistic healing, and where medicine could go next. We talked about missing elements in healing...things that cannot be measured, or graphed, or PET scanned. All this while radioactive chemicals were giving them snapshots of me. Look where technology has taken us, amazing! Look where we are evolving to on a consciousness level that with healing, acknowleding there might be something more going on . You can't put people into x+y=z, and we just don't know why. We also talk about why some people go dark, and others seem to have a peace.
So, I have three days of kicking back. I am not reading anymore. I am just going to get my Zen on. Walk in the park, cook healing food, drink healing tea, meditate on my rock near the creek, and listen and observe. Play with my kid and hubby.
Next week, a host of appointments. I had PET/CT, PIM. Next up, bone scans, mammos, and genetics. Meetings with oncologists (Astrid rocks by the way! THANK YOU!). By Thursday, I will probably know what the doctors are thinking about it all. Their plans.
I then get to decide my own.
PRACTICALLY:
Childcare help:
School informed us today, much to our surprise and without solicitation, that Bug is welcome to attend all 7 weeks of summer camp, so she can have a place familiar and steady, and with smiling faces. I once again, am humbled at the generosity of those around me. This is a god send, because we were wondering how we were going to pay for the help we needed. Already, it is overwhelming. I didn't realize how much I did until now! Goodness!
I know this has started to wear on Bug. She is happy to have playdates, but is crying about us being gone so much. So, I am going to let her go to the place close to us still, like she wants, two days a week and school camp two to three days a week. And I hope to give her as much down-time as possible to go to the zoo with friends, and have a summertime as well. That is just going to have to be a wait and see kind of thing.
But I am jumping ahead of myself. Next week will let us know a bit more.
Okay, going to go rest my mind now and color with Bug.
Thanks to you all!!!!
Blessings,
Jenna
First of all. I am so humbled, touched, in awe...of the profound generosity of the community around me. I just wish I could hold up a mirror that caught the beauty of the people surrounding me, so everyone could see. It isn't just what you are doing, but the look in your eyes, and the energy you are giving off is so free and compassionate.
I think it would look like a beautiful crystal, catching every color in it's purist form. I am honored to have such wonderful people around me in my life. I just wish everyone could see this. Thank you all so very very much. If kindness is a cure, I should be healed in about a day's time. :)
I have decided I am going to write this blog in three ways:
- I will put PRACTICAL SUPPORT in the entries that are the nuts and bolts of what we are needing in a practical way.
- I will put HEALTH UPDATE for entries talking about any news on that front.
- and I will put JENNA'S JOURNEY for those entries more personal essay-like. Letting you know what is going on inside my head/heart/spirit. I bet those will get long winded and wandering. So skip if you feel the need. :P hehehehe.
Updates on the health front:
Started my series of testing to see how far this has spread. No answers yet. Just tests. I should be glowing in the dark here pretty soon! When you enter a room that has a radioactive warning sign on it, and a lady puts an IV in your vein...well, you take a deep breath and laugh about your newfound "glow". Yes, I laughed a lot.
And talked a good bit with the nurse and technician. Interestingly, we ended up talking about holistic healing, and where medicine could go next. We talked about missing elements in healing...things that cannot be measured, or graphed, or PET scanned. All this while radioactive chemicals were giving them snapshots of me. Look where technology has taken us, amazing! Look where we are evolving to on a consciousness level that with healing, acknowleding there might be something more going on . You can't put people into x+y=z, and we just don't know why. We also talk about why some people go dark, and others seem to have a peace.
So, I have three days of kicking back. I am not reading anymore. I am just going to get my Zen on. Walk in the park, cook healing food, drink healing tea, meditate on my rock near the creek, and listen and observe. Play with my kid and hubby.
Next week, a host of appointments. I had PET/CT, PIM. Next up, bone scans, mammos, and genetics. Meetings with oncologists (Astrid rocks by the way! THANK YOU!). By Thursday, I will probably know what the doctors are thinking about it all. Their plans.
I then get to decide my own.
PRACTICALLY:
Childcare help:
School informed us today, much to our surprise and without solicitation, that Bug is welcome to attend all 7 weeks of summer camp, so she can have a place familiar and steady, and with smiling faces. I once again, am humbled at the generosity of those around me. This is a god send, because we were wondering how we were going to pay for the help we needed. Already, it is overwhelming. I didn't realize how much I did until now! Goodness!
I know this has started to wear on Bug. She is happy to have playdates, but is crying about us being gone so much. So, I am going to let her go to the place close to us still, like she wants, two days a week and school camp two to three days a week. And I hope to give her as much down-time as possible to go to the zoo with friends, and have a summertime as well. That is just going to have to be a wait and see kind of thing.
But I am jumping ahead of myself. Next week will let us know a bit more.
Okay, going to go rest my mind now and color with Bug.
Thanks to you all!!!!
Blessings,
Jenna
Subscribe to:
Posts (Atom)