First of all, HAPPY BIRTHDAY MOM!!!!!!!!
Now back to our regularly scheduled program of cancer drama and healing.
It is often hard to decide what and how to post on this blog. Because each of you have your own filter. Some will read things as dire, others as "things are rough, but not so bad" and others see my spirit strong. All from the same post. I learned this early on and know that I just have to post what is on my mind. It is tricky if I become attached to helping you each process the information I give you. So instead I have to just let it go and let you process and interpret in your own way. I sometimes second guess if I should be writing at all. But I started this, so for now, I will keep going. Just don't read this blog like you would a novel. If you read this, be an active reader. Pray, help practically, do your own spiritual journey. Please don't read it like you are waiting for the ending of a mystery novel. I say that with a bit of cheeky humor and a lot of love.
That being said.....I hide some thing. I definitely keep some of this journey private. But at this stage I cant' anymore. So I am pondering how to continue this blog. It is going to open my very very private self up to the world. And it's judgments on the deepest parts of myself. So I ask that if you continue to read this blog, you do so with deep respect, let your judgments go, and use lots and lots of compassionate "listening" and loving kindness.
I will write more later. I am still in the process of deciding. However, Spirit is lifting me up. And last night, I felt buoyed by song, by prayer. If you had come up to me and said, "You have a really bad cancer that is aggressively attacking your spine and liver" I would have laughed and said you were crazy. I was in the moment, letting all the love and prayers flow, and living very very truthfully. I was JOY. Yes, JOY.
I am learning so much about the power of the "something more" that binds us all. That we can't quantify. That we can see or touch or taste or smell and analyze and rely on to put into research or a formula.
I see and feel the STARK difference between living in fear and living in peace. Of "knowing".
Again, I am pondering where I am going to take this blog now.
Lots of info in this one post. I know. But for you those of you wondering:
I am going to ask the doc some very straight forward questions on Tuesday. and go from there. I am leaning towards chemo, maybe not Abraxane, but most likely. But I deeply believe the missing ingredients in putting this thing into NED (No Evidence of Disease) is not going to be found in a chemo drug, but in doing some deep spiritual work and really truly taking care of my body and it's own unique needs (ie, eating REALLY well and eating for what my body needs, exercising to my body's needs, waking up everyday and my first thought being praising the strength of Spirit and my Spirit and going to bed GRATEFUL GRATEFUL GRATEFUL and then living according to my own Spirit and guidance from the higher source beyond charts and graphs and research)
And that work may isn't about becoming cancer free, but about living FULLY AWAKE. What a different ride that is indeed.
Okay, enough for now. Time to wake up the girl and get her ready for Halloween at school! COWGIRL PICTURES TO FOLLOW. ;)
I am well.
I know that today and in this moment
my Spirit and body thrive.
I don't know how,
but I rise above
and the joy of my Spirit
makes the pain of my body diminish
and I am well.
And the power of Spirit to do this,
makes me humble and happy and
oh
so
grateful.
Jenna
paint brushes, yoga mats, and Stage IV Breast Cancer. A "How to Deal" Guide.
Friday, October 30, 2009
Tuesday, October 27, 2009
Chemo Round 3
I don't know what to say anymore. I feel like I am hitting you all with a cold splash of water and punching you in the gut. But here we go....
It is still spreading, up my spine and in my liver. NOT to the brain. Woohooo, my idea of a head cold pans out.
But the liver makes lots o' sense and I asked "did it go up my spine" because of the pain. Sigh.
So we go back to Abraxane. I can't process all of this right now. So much. So that is that for now.
Not great, no horrid, but a HUGE challenge ahead.
Jenna
It is still spreading, up my spine and in my liver. NOT to the brain. Woohooo, my idea of a head cold pans out.
But the liver makes lots o' sense and I asked "did it go up my spine" because of the pain. Sigh.
So we go back to Abraxane. I can't process all of this right now. So much. So that is that for now.
Not great, no horrid, but a HUGE challenge ahead.
Jenna
Thursday, October 22, 2009
starting to make sense, Part two
So, my "it's the drugs" theory isn't panning out to the doc. So she is sending me in for a brain MRI and a PET/CT to peek inside and see if the cancer has travelled anywhere new. The brain MRI I had at the onset was all clear, it would be really NICE that is still is.
I think, because of my dripping running nose, and cough with phelm, MAYBE this all over a cold. She is checking for mono. But beyond that, she just feels concerned enough to peek inside and rule some stuff out.
So off I go. MRI's are like being inside a video game, with buzzes and bangs and clangs. fun times.
If you feel inclined to take me on Monday to said appointments and you can clear you schedule for a 10:30-4:00 run, please let me know. I can't go this day alone.
Jenna
I think, because of my dripping running nose, and cough with phelm, MAYBE this all over a cold. She is checking for mono. But beyond that, she just feels concerned enough to peek inside and rule some stuff out.
So off I go. MRI's are like being inside a video game, with buzzes and bangs and clangs. fun times.
If you feel inclined to take me on Monday to said appointments and you can clear you schedule for a 10:30-4:00 run, please let me know. I can't go this day alone.
Jenna
Saturday, October 17, 2009
Something is starting to make sense
Been having a rough month. And I think I finally know why. Once I got still, and could listen and had a few good friends to bounce my "bouncing" thoughts off of, I do believe I have a clue. I have been in pain, sleeping a lot, and unable to fully "wake up" so many days. But it isn't depression. When it is past, I am very happy, peaceful, contented, hopeful. Then this monster comes and shuts my brain off half way. I believe it is a medication I am taking. And today proved it. I was doing fine, well, alert, and then the person with me saw it, I turned "off". Like a switch was flipped. My brain started having trouble processing information and I felt drugged.
Drugged.
I am pretty sure my meds needs to be tweaked. I had asked to be taken off one of the drugs, if not also the pain mends I have been on. They aren't going to like that at all. They always deswayed me. But I am not living my life right now. And there is n point in being here, if I am going to be here, tweaked out on drugs, on my couch, feeling like do-d0. Now I am going to demand it. There are alternatives I can rely on and can put in place.
That being said, I am moving into a 5 day "completely nuture my body" phase. I have been EXHAUSTED and not stopping. As a friend pointed out yesterday, the difference before and after a nap was marked. I know I have been exhausted and unable to stop.
That is where YOU come in. If you are close by. I need your help in "restore Jenna's energy" movement. For the next 5 days, I am resting, resting resting. Doing ONLY that which restores my energy.
I also need:
Last week, my friends who came over on an SOS call to help said I sounded drunk. I am really calling it in. I can see the way through, and taking 5 days of letting my friends step in and take care of me is required. I have to be vulnerable and honest right now. But I can see the way through, and that means asking for help.
I have thought about checking into the hospital several time this month for exhaustion. This can be fixed. This can be addressed. And I see how. But that means needing people to lean on.
Got an hour to spare here or there. Something on that list do-able? Let me know.
FOLLOW UP: Everyone once in awhile I go back through this blog to tweak it, edit it, and clarify things, or give follow ups. This one is LONG overdue and very important to me to get out there. If you are in medical care, DO NOT BE AFRAID TO SAY "THIS MED IS MAKING ME NOT RIGHT - WHAT CAN WE DO?" Meds are very powerful things, changing the neural synapic makeup and sometimes that damage, if goes on for too long, can't be undone. I had to be slowly taken down off this medicine, and it does make people "out of it" if it isn't good for them. BE PROACTIVE! SAY SOMETHING! There are options and the docs need to know. I have had to do this more than once, and everytime, we find out way around the med. BE PROACTIVE - it is YOUR body, and your body may react differently than the "norm". Okay? Soapbox gone ;)
Thanks
Jenna Helm
And food for thought:
Drugged.
I am pretty sure my meds needs to be tweaked. I had asked to be taken off one of the drugs, if not also the pain mends I have been on. They aren't going to like that at all. They always deswayed me. But I am not living my life right now. And there is n point in being here, if I am going to be here, tweaked out on drugs, on my couch, feeling like do-d0. Now I am going to demand it. There are alternatives I can rely on and can put in place.
That being said, I am moving into a 5 day "completely nuture my body" phase. I have been EXHAUSTED and not stopping. As a friend pointed out yesterday, the difference before and after a nap was marked. I know I have been exhausted and unable to stop.
That is where YOU come in. If you are close by. I need your help in "restore Jenna's energy" movement. For the next 5 days, I am resting, resting resting. Doing ONLY that which restores my energy.
I also need:
- Someone who can take Kara to school Monday and Tuesday. She needs to be there by 8:30.
- Someone to come over and cook my squash soup, and play scrabble while it simmers.
- Someone to do dishes every other day
- Someone to grocery shop at PCC for some basic staples. Apples, kale, lemons, etc.
Last week, my friends who came over on an SOS call to help said I sounded drunk. I am really calling it in. I can see the way through, and taking 5 days of letting my friends step in and take care of me is required. I have to be vulnerable and honest right now. But I can see the way through, and that means asking for help.
I have thought about checking into the hospital several time this month for exhaustion. This can be fixed. This can be addressed. And I see how. But that means needing people to lean on.
Got an hour to spare here or there. Something on that list do-able? Let me know.
FOLLOW UP: Everyone once in awhile I go back through this blog to tweak it, edit it, and clarify things, or give follow ups. This one is LONG overdue and very important to me to get out there. If you are in medical care, DO NOT BE AFRAID TO SAY "THIS MED IS MAKING ME NOT RIGHT - WHAT CAN WE DO?" Meds are very powerful things, changing the neural synapic makeup and sometimes that damage, if goes on for too long, can't be undone. I had to be slowly taken down off this medicine, and it does make people "out of it" if it isn't good for them. BE PROACTIVE! SAY SOMETHING! There are options and the docs need to know. I have had to do this more than once, and everytime, we find out way around the med. BE PROACTIVE - it is YOUR body, and your body may react differently than the "norm". Okay? Soapbox gone ;)
Thanks
Jenna Helm
And food for thought:
Tuesday, October 13, 2009
Must Read Article
Please, to the end.A Rebel Cancer Girl indeed. The info on research funding and metastatic breast cancer SHOULD make your uneasy. Especially after Soma, Amy, and Fritzi walked their tushies off under my name. Did all the money they raise go to met girls like me? Or just the ones they can save? Read on...
Fighting Advanced Cancer is Like Being a Secret Alligator Wrestler
Fighting Advanced Cancer is Like Being a Secret Alligator Wrestler
Sunday, October 11, 2009
Those Who Rock, an incomplete and incorehent list
Jean H. ----- Jeri is a ROCKSTAR. I love fate, seredipity, God, the Universe. Thank you for her. Thank you for praying for me, brought me to her. ;) Thank you thank you.
Jeri Rocks. Best day of chemo in awhile and you just SHINE.
Mom rocks. Walked me through a dark spot tonight. Fear fear fear + shit really hurts for too long = scared little girl raising a kid. Aren't we all?
Kevin rocks. It was nice sitting with you today, thanks for the loving goodbye. There is the term LYLAS, you are LYLAB (bro).
Soma, and Amy and Fritzi --------rockstars times three. WOW. is all I can say. wow.
Choir of Light angels. Thanks Carolellen for more chicken soup. It was delicious.
WENDY! YOU DID IT! And you sounded BEAUTIFUL.
That is all I got the juice for. Something is TRIPPING OUT. Ringing in my ears for two days now, trippy stomach.........
Life is funny. Life is short. Life is sweet. Life can be scary sometimes too.
And of course....MORE music...it is better than chemo, better than blood. I plan to be an angel singing alle allelujah.....
jenna
Jeri Rocks. Best day of chemo in awhile and you just SHINE.
Mom rocks. Walked me through a dark spot tonight. Fear fear fear + shit really hurts for too long = scared little girl raising a kid. Aren't we all?
Kevin rocks. It was nice sitting with you today, thanks for the loving goodbye. There is the term LYLAS, you are LYLAB (bro).
Soma, and Amy and Fritzi --------rockstars times three. WOW. is all I can say. wow.
Choir of Light angels. Thanks Carolellen for more chicken soup. It was delicious.
WENDY! YOU DID IT! And you sounded BEAUTIFUL.
That is all I got the juice for. Something is TRIPPING OUT. Ringing in my ears for two days now, trippy stomach.........
Life is funny. Life is short. Life is sweet. Life can be scary sometimes too.
And of course....MORE music...it is better than chemo, better than blood. I plan to be an angel singing alle allelujah.....
jenna
Saturday, October 10, 2009
The Walk is ON
So, I have spent the last two days sleeping, with a quick jaunt out to choir rehearsal somewhere in the middle. I am a wee bit freaked out it is Friday, because I don't really remember the week. I remember going in for chemo and getting a flu shot, some nice music one day, and then an amazing day at chemo this week, and then it is like I have been in a daze and sleeping. I am trying to keep my spirit up. Going through this cycle of I feel okay for two days, get chemo, and get drug through what feels like a mild to moderate case of the flu, with muscle aches and joint pain and usually the inability to keep my eyes open one day a week.....I then spent a couple of days recouping and climbing back out, only to start over....it is wearing on my psyche. Because that one day a week of it "hitting" is drawing out into 4 days.
I know I have said I have been knowing I have to slow down and rest. I think that overdrive went out and I am resting now, because I just cant' stop sleeeeeeping.
And then it dawned on me, as I wake up in the middle of the night..
did someone say Columbus day to me?
The three day walk?
Is it REALLY Columbus day weekend?
And it is....
which means.....
Soma and the Team are WALKING!!!!!!!!!!!!!!!!!
In my chemo stupor, the loss of what day it is, I missed this. I knew yesterday for some reason, I wanted to call Soma.
SO! GO TEAM DC RACK PACK GO!!!!!!!!!!!
THANK YOU!
SEND PICTURES!!!!!!!!!!!!!!!
I remembering hoping to be there. I am glad I didn't buy a ticket. I won't have made it there.
But I am there in spirit and gratitude and am proud of your fundraising prowess! I checked those final tallies and WOW.
Fritzi's blog was reminding us to get our regular checkups and do mammograms.
Here are a couple of things I learned along the way that could save a 20 or 30 something's life that add to Fritzi's advice:
Okay, back to sleep. I forced myself awake to write this and acknowledge the Walk.
I am with you in spirit!
Jenna
I know I have said I have been knowing I have to slow down and rest. I think that overdrive went out and I am resting now, because I just cant' stop sleeeeeeping.
And then it dawned on me, as I wake up in the middle of the night..
did someone say Columbus day to me?
The three day walk?
Is it REALLY Columbus day weekend?
And it is....
which means.....
Soma and the Team are WALKING!!!!!!!!!!!!!!!!!
In my chemo stupor, the loss of what day it is, I missed this. I knew yesterday for some reason, I wanted to call Soma.
SO! GO TEAM DC RACK PACK GO!!!!!!!!!!!
THANK YOU!
SEND PICTURES!!!!!!!!!!!!!!!
I remembering hoping to be there. I am glad I didn't buy a ticket. I won't have made it there.
But I am there in spirit and gratitude and am proud of your fundraising prowess! I checked those final tallies and WOW.
Fritzi's blog was reminding us to get our regular checkups and do mammograms.
Here are a couple of things I learned along the way that could save a 20 or 30 something's life that add to Fritzi's advice:
- In the MRI place, the doc has signs up EVERYWHERE that INCLUDE TRUSTING YOUR INTUITION. If you FEEL like something is wrong, go in and get it checked out.
- Young women have thicker breast tissue, and regular mammograms may miss smaller cancer tumors.
- Breast cancer has a higher mortality rate in those in their 20's and 30's because it is often overlooked as being a cyst because the spike in women in this age bracket. It USED to be that it was an older persons, post menopause, that got breast cancer. The reality is different now. So many young women are being "looked over", even with lumps that can be felt. I read this over and over again on the BC blogs and group sites. So we end up at Stage IV before we finally get the diagnosis and help.
- Stage IV is considered a chronic disease most often now because of the progressively more effective and targeted drugs and understanding of the disease. BECAUSE OF RESEARCH and because people like the DC Rack Pack walk and raise funds and do the footwork to start research going.
Okay, back to sleep. I forced myself awake to write this and acknowledge the Walk.
I am with you in spirit!
Jenna
Subscribe to:
Posts (Atom)