Had a visit from one of the weekly hospice nurses on Mondays...needle changes for port and my weekly shower which allows me to wash my hair...such a treat...steroids seem to helping my feet and yet they are very challenged...Cat scan is now on Thursday instead of Wednesday...teeth cleaning tomorrow...skin check on Friday...phone calls and office stufff to do...medical billing ongoing and organizational stuff that takes hours per week to balance out...was able to see my son today...I haven't seen him since I got out of the hospital...it was a good day today...appreciation for the freedom to drive my car when just a month ago ...I was getting my gtube out...every moment I get to have freedom is amazing...now if I could just bring back walking into my program ...it would be so much better...
Sending love to everyone...thank you for your support...I love you!
Monday, June 27, 2011
Sunday, June 26, 2011
letters from a dear friend
I have permission to share these heart felt letters...it seems like yesterday when I was loving my friend Gladys Alpert through her transition...her husband/ex husband/ whatever title is appropriate was part of that journey with her and the so many of us who got to share with her...these letters are in reference to that time of my life....Thank you Geoff for these beautiful words ...we can all share and cry together
first one from May 2011
first one from May 2011
My Beloved Summer,
It is so hard for me to put into words what I have been/am feeling for and towards you. Many times I attempted to write you only to fall short of being able of conveying what is in my heart, as it takes me to such a deep and special place within my being. I write this with positive energy, and love. What I am writing to you is sent with my utmost respect, love and gratitude to you always.
As you know, much better than I, we each have only so much control of our lives and destinies. However, what is important is how we each lead our life in the love, joy, care and good deeds we share and ultimately leave with others. In this regard, you have already left your beauty and spirit for so many others to cherish for the rest of their lives. Only God knows what is in store for each of us, when it will be our time to join and reunite with the many friends and family who have preceded us. But hopefully, when it becomes that time, each of us is able to move forward with a smile in our hearts, with courage, dignity, contentment and in peace. At least this is how I think and feel.
When you wrote in your InnerHouse email about coming home from the hospital and being under the care of Scripps Hospice, I couldn't help but think about when Gladys made that decision.
This past Sunday, May 14, 2011, was the 9th anniversary of Gladys' passing. I went to the cemetery, placed some beautiful flowers in the vase, and sat alone with her for quite awhile. As I normally do, silently I discussed many topics with her. One of the items was you. When I said a prayer for you and asked Glad to help look over you, I saw her smiling with arms fully open. A smile came across my face as the tears were falling down my cheeks. I realized that nothing needed to be said by me as she had it all under control. It was as if I broached a subject matter where I was way behind. Not only in timing but also in the depth of scope and understanding. The energy was warm and bright and I was reassured that everything will be fine. I sincerely hope that this brings you warmth and not sadness.
I guess I will close this by repeating something I have told you before. Summer, I love you and am forever in gratitude to you. You were there for the most special person in my life, Gladys, throughout her entire ordeal. You have been there as a friend, mentor and support for me and my daughters. I can only imagine what you are dealing with and am there for you in any way you desire. The only need I have concerning you is to do anything which brings you peace, comfort, ease your pain and to be free once again.
Please let me know if there is anything I can do.
With All My Love,
Geoff
Second letter from a few days ago june 2011
Summer,
So sad to read what you wrote regarding meeting with your Doctor (6/24/11). As you well know, these were many of the same thoughts and feelings that Gladys dealt with during her battle with the disease. To me, she is the bravest and most courageous person I ever have known - the way she dealt with all the pain, feelings, emotions, etc. I see the same qualities in you even though I am so distant in seeing what you have been and are experiencing on a daily basis.
I think the greatest thing I did for Gladys during her last days was to put my own feelings of sorrow, grief and emptiness regarding her soon-to-be passing on the back burner and really try to focus on helping her to feel free, be at peace and be able to let go when it was her time. I have shared this with you before. She fought and held on much longer than was expected mostly because of her love for our daughters, especially Briana. She was so concerned for them. So, most of my final private time with her in her final month was to assure her that I would always be there for them, that they would be ok and realize the love and foundation she had already set for them. I also had to let go and know that it would be a short absence in time before we could reunite and be together forever, in a better place.
Although your situation and battle is so different, it is also much the same as Gladys'. The love and appreciation I carry in my heart for you leads me to the same place, wishing you peace and to be free when your time comes. Whether that time is days, weeks, months or years, I hope you are able to not burden yourself with all the worries and fears that bind us here on earth. I hope you realize and feel so good about the person you are and have been for all who know you.
I send you all my love. positive thoughts and hopes that you are able to lead your life without fear and worry. We have no control when it is to be our time to move forward in our never-ending journey but we do control what we do here and leave for others. This is where you already shine with your family, friends, students and acquaintances. When you want to cry then cry but also find the happiness and peace that you have inside and have shared with so many others. As Gladys wrote, you are a true angel. Please know peace and contentment in your heart and soul.
With All My Love,
Geoff
Saturday, June 25, 2011
phone call with Pema Chodron
Today we finally connected formally and acknowledged our teacher student relationship in our now unique way...her voice on the phone sounds even younger than her audio recordings...she is amazing and our conversation has and will continue to mean the world to me...in more ways than anyone including her will ever know.
She has requested photos of me with additional information so she can practice Tonglen with me ongoing and I have been given permission to contact her at any time for more of her wisdom as things should come up...
For now...a general view...
We talked about the real fear of Pain...we talked about Death on many levels...we talked about Life...she shared stories that were very helpful...
it is clear why she is my teacher ...she is like no other...
We talked about perception of illness and the blame that is often viewed by some as karma with or without blame and what that does to the person who is ill...she has a very strong opinion about that...
More to come...for now..I was too excited not to share this immediatly!!!!!
I did ask for permission to share my phone conversation with her...she was open and loving about me sharing on my blog...thank you Pema..I love you
expanded to an eight hour stretch for detox
oral meds are now out to an 8 hour stretch...had to start steroids for my feet ...already see an improvement on my feet regarding the severe burning...have a wonderful sunny day...much love to everyone...
Friday, June 24, 2011
from my meeting with my Doctor today
I confessed my fears today and I shared my innermost heart felt emotions during my appt today...
We had a serious conversation about quality of life and I'm at the cusp of weighing what my treatment is doing vs improvement vs pain caused by it...if you look at me..I don't look sick...no one would know...and then he looked at my feet and was horrified by the severity of the toxic reaction I'm having to this chemo...tonight I have to start a series of steroids and my next chemo has been cancelled. It will be determined in a few weeks if I am to continue on with this chemo or any other chemo.
Today was one of the most difficult days of my life emotionally... truly facing what is coming ...even if chemo buys me a few more months or even a year...and then how long will it take once I stop all treatment??? So many unknowns...it could be months...it could be less ...it could be more...no way to know...what are the expected complications as the cancer grows...what are unexpected??? How to stay positive when pain may be around the corner...it's not the pain that hospice can help me with ...it's the pain from the procedures in radiology...if and when I need another tube in my belly or to drain fluid if it should accumulate...the bowel obstruction pain that we all know about from previous blog entries...why can't I just pass without all of that worry??? It's easy to suggest not to worry until you get there but it's not so easy once you have been on this other side of it...the pain is more than real...it's beyond words ....
Trying to continue to navigate the finances and to just keep asking...is there anyone out there who can offer me ongoing help? Please email me for my address ... the innerhouse@gmail.com
I have filed for certain disability programs and it could take months to even get anything ...if at all...
I just have to open my heart and keep asking....I don't know how to be here with the emotions that I feel ...and yet...I don't get to run away...I just keep wanting to give love and feel love...
My Doctor and I held each other crying...I continue to cry...I have the tools to not run away and yet....all I can do is cry...grieving for my life...grieving for wanting to stay ...grieving for all of the other woman who have what I have and whom have passed and who have had pain...
I guess today I just need to cry...
I love you.
We had a serious conversation about quality of life and I'm at the cusp of weighing what my treatment is doing vs improvement vs pain caused by it...if you look at me..I don't look sick...no one would know...and then he looked at my feet and was horrified by the severity of the toxic reaction I'm having to this chemo...tonight I have to start a series of steroids and my next chemo has been cancelled. It will be determined in a few weeks if I am to continue on with this chemo or any other chemo.
Today was one of the most difficult days of my life emotionally... truly facing what is coming ...even if chemo buys me a few more months or even a year...and then how long will it take once I stop all treatment??? So many unknowns...it could be months...it could be less ...it could be more...no way to know...what are the expected complications as the cancer grows...what are unexpected??? How to stay positive when pain may be around the corner...it's not the pain that hospice can help me with ...it's the pain from the procedures in radiology...if and when I need another tube in my belly or to drain fluid if it should accumulate...the bowel obstruction pain that we all know about from previous blog entries...why can't I just pass without all of that worry??? It's easy to suggest not to worry until you get there but it's not so easy once you have been on this other side of it...the pain is more than real...it's beyond words ....
Trying to continue to navigate the finances and to just keep asking...is there anyone out there who can offer me ongoing help? Please email me for my address ... the innerhouse@gmail.com
I have filed for certain disability programs and it could take months to even get anything ...if at all...
I just have to open my heart and keep asking....I don't know how to be here with the emotions that I feel ...and yet...I don't get to run away...I just keep wanting to give love and feel love...
My Doctor and I held each other crying...I continue to cry...I have the tools to not run away and yet....all I can do is cry...grieving for my life...grieving for wanting to stay ...grieving for all of the other woman who have what I have and whom have passed and who have had pain...
I guess today I just need to cry...
I love you.
Wednesday, June 22, 2011
7 hour interval starts today...life goes on with uncertainty and fear and love
...almost off of the oral pain meds...since my pain was related to the g tube...actually...the intense pain began as an upper bowel obstruction...after the g tube was placed and the bowel obstruction improved...the pain was directly caused by the g tube...June 1 the g tube was painfully removed ( unusual for most...I'm now finding I have severe pain when there is any invasion in my abdomen) and the pain diminished to zero...then the cold turkey off of the dilaudid was mistakenly done through hospice...drugs were put back into my system ...fentenyl patch and oxycodone ...so I could slowly detox the drugs from my system....as I remain pain free
( a place I have come to appreciate beyond belief) I continue to ween myself off of all meds ...I'm now at a seven hour interval from the orals and on sunday the plan is to slowly decrease the patch amount.
The current chemo I'm on is causing my feet to blister and burn so I haven't been able to go for my walks that I love so much...and yet ...I have it so much better than most....I'm still so grateful...I know what I'm facing now...I know the chemo I'm on can only be used for less than one year...actually around 9 months unless the side effects become too much. I know what is happening and I'm preparing every moment for what is coming. I know there are miracles and I also know the pain that I have felt is haunting me. I never knew pain could be so traumatic.
I have the tools from my spiritual training to surrender...to allow...to dissolve...and there are moments when I can do this...then ...I find myself waking up in the night afraid of the pain that may be around the corner....then I find peace again and so it goes...around and around and around...if it weren't for the love of all of you I don't know how I would have made it so far...I feel your love and I welcome it into my life on all levels.
I meet with my Dr. this friday ( a normal appt that happens before chemo...next chemo is number 4 on July 5) I'm also hopeful that maybe we can establish a relationship with radiology so if and when I may need tubes or drainage procedures that they treat me with the humane understanding that for some CRAZY reason...I have PAIN when most feel relief...it's not just PAIN it is unimaginable pain. While I was in the hospital the last time...I was getting another tube put in and they didn't give me enough pain meds and I was screaming out " I FEEL THIS !!!! PLEASE HELP ME!!! Pain continued...
I wasn't going to say anything about this again but so many of you have told me that because of the honesty of this blog...it is helping so many of you who find yourself in places where you don't know what to do ...what to say...what to ask for...
I continue to navigate through the financial craziness of my situation...I'm in hospice through my insurance which means I have a few categories as to where financial responsibility lies...for instance...I just found out the CAT scan that I'm supposed to get next week is not covered because I'm with hospice ...even though...I can still see my Dr. for care...this has become incredibly complicated and frightening...the money from the fundraiser that was so lovingly raised through summer's hope and others has been going directly to pay for medical bills that were already coming in...now more bills are mounting and money is running out again...
I'm currently filing for social security benefits which will help a small amount but will not be enough to pay the newest bills coming in and it takes months for it to kick in...I don't know what to do other than to ask for continued support as the summershope fundraiser ran through April and that money is almost gone...I'm embarrassed to have to keep asking but the truth is I need help ongoing...I'm allowed to receive gifts and donations ...there is a pay pal account set up through the summershope website and there is the option of sending directly to me...I'm really scared and the financial worries have been exhausting ...with the generosity that has allowed me to live so far ...it's so hard to keep asking...please let me know if any of you can continue to help me or if you know of anyone who has financial abundance and you can direct them to me.To qualify for certain programs you really have to be homeless...I know what I qualify for and what I don't...I have already had help looking into this. My current health insurance is what is also allowing me to have hospice...that amount to just have that exceeds $1200 per month...other ways to get on hospice are possible but I don't qualify. The medical bills that I thought were not my responsibility become my responsibility due to so many reasons it would take hours to explain it...I was on the phone for over 4 hours yesterday just so I could buy more time with appeals and this is a part time job...I have to pay or it will go to collections...
All I can do is ask for your ability to help me...I would appreciate it so much! I didn't want to file for social security because I always came back to work...All I want to do is come back to work..I miss my life and I miss all of you and all I want to do is to live my life..
I have spent my entire career helping others and forgot or didn't know how to set up a plan for myself...I made enough money to share expenses and just wasn't able to financially build myself a nest egg...then time passed so quickly and other illnesses began to happen and then more and more time passed me by just trying to get by...I'm trying to fall back into the net of surrender...I'm trying to trust ...I'm trying to take the remaining breaths that I have and honor love in all directions ...to shower all of you with my love and support...to let myself go if that is what is being asked of me...
Please help me to surrender.. I will help you too!
I love you
( a place I have come to appreciate beyond belief) I continue to ween myself off of all meds ...I'm now at a seven hour interval from the orals and on sunday the plan is to slowly decrease the patch amount.
The current chemo I'm on is causing my feet to blister and burn so I haven't been able to go for my walks that I love so much...and yet ...I have it so much better than most....I'm still so grateful...I know what I'm facing now...I know the chemo I'm on can only be used for less than one year...actually around 9 months unless the side effects become too much. I know what is happening and I'm preparing every moment for what is coming. I know there are miracles and I also know the pain that I have felt is haunting me. I never knew pain could be so traumatic.
I have the tools from my spiritual training to surrender...to allow...to dissolve...and there are moments when I can do this...then ...I find myself waking up in the night afraid of the pain that may be around the corner....then I find peace again and so it goes...around and around and around...if it weren't for the love of all of you I don't know how I would have made it so far...I feel your love and I welcome it into my life on all levels.
I meet with my Dr. this friday ( a normal appt that happens before chemo...next chemo is number 4 on July 5) I'm also hopeful that maybe we can establish a relationship with radiology so if and when I may need tubes or drainage procedures that they treat me with the humane understanding that for some CRAZY reason...I have PAIN when most feel relief...it's not just PAIN it is unimaginable pain. While I was in the hospital the last time...I was getting another tube put in and they didn't give me enough pain meds and I was screaming out " I FEEL THIS !!!! PLEASE HELP ME!!! Pain continued...
I wasn't going to say anything about this again but so many of you have told me that because of the honesty of this blog...it is helping so many of you who find yourself in places where you don't know what to do ...what to say...what to ask for...
I continue to navigate through the financial craziness of my situation...I'm in hospice through my insurance which means I have a few categories as to where financial responsibility lies...for instance...I just found out the CAT scan that I'm supposed to get next week is not covered because I'm with hospice ...even though...I can still see my Dr. for care...this has become incredibly complicated and frightening...the money from the fundraiser that was so lovingly raised through summer's hope and others has been going directly to pay for medical bills that were already coming in...now more bills are mounting and money is running out again...
I'm currently filing for social security benefits which will help a small amount but will not be enough to pay the newest bills coming in and it takes months for it to kick in...I don't know what to do other than to ask for continued support as the summershope fundraiser ran through April and that money is almost gone...I'm embarrassed to have to keep asking but the truth is I need help ongoing...I'm allowed to receive gifts and donations ...there is a pay pal account set up through the summershope website and there is the option of sending directly to me...I'm really scared and the financial worries have been exhausting ...with the generosity that has allowed me to live so far ...it's so hard to keep asking...please let me know if any of you can continue to help me or if you know of anyone who has financial abundance and you can direct them to me.To qualify for certain programs you really have to be homeless...I know what I qualify for and what I don't...I have already had help looking into this. My current health insurance is what is also allowing me to have hospice...that amount to just have that exceeds $1200 per month...other ways to get on hospice are possible but I don't qualify. The medical bills that I thought were not my responsibility become my responsibility due to so many reasons it would take hours to explain it...I was on the phone for over 4 hours yesterday just so I could buy more time with appeals and this is a part time job...I have to pay or it will go to collections...
All I can do is ask for your ability to help me...I would appreciate it so much! I didn't want to file for social security because I always came back to work...All I want to do is come back to work..I miss my life and I miss all of you and all I want to do is to live my life..
I have spent my entire career helping others and forgot or didn't know how to set up a plan for myself...I made enough money to share expenses and just wasn't able to financially build myself a nest egg...then time passed so quickly and other illnesses began to happen and then more and more time passed me by just trying to get by...I'm trying to fall back into the net of surrender...I'm trying to trust ...I'm trying to take the remaining breaths that I have and honor love in all directions ...to shower all of you with my love and support...to let myself go if that is what is being asked of me...
Please help me to surrender.. I will help you too!
I love you
Tuesday, June 21, 2011
slow detox
I now have stretched out to a 6 hour interval for the meds...by sunday I should be off of the pills and will then need to ween off of the medication patch.
Feeling so many things...mainly missing all of you...I love you
Feeling so many things...mainly missing all of you...I love you
Saturday, June 18, 2011
a good change in detox
I have now begun to stretch the 1/2 tablet to every 5 hours instead of 4 hours...another good change...just now going to take a bath and embrace this beautiful day...
Love to everyone...
Love to everyone...
Thursday, June 16, 2011
learning to surrender
every moment...learning to surrender...to feel fear and gratitude at the same time has me perplexed much of the time...I want to be fearless and then I'm sucked into this vortex...I must be gentle ...a slight delay to my day as I felt very fatigued...coming off of these drugs is rough...I'm now at 1/2 of a tablet every 4 hours...next step is coming...
Wednesday, June 15, 2011
day by day
I can't believe it's already Wednesday...still coming off of the detox regimen...I should be at 1/2 of a pill by tomorrow every 4 hours...the next step is to change the time duration from 4 hours to 5 hours to 6 hours and then done...by the weekend I should be off of the regular pain meds and then it will be time to reduce the patch slowly every 3 days ...it has been quite the experience...Thank you to some of my Blend class friends who were able to come and visit...I have missed you all so much...it will be good to see the rest of you next time...thank you so much for all of the love...the ache in my heart from not teaching and showing up to classes is so strong...I ache for so much right now...I ache for my life as I knew it...it's all about learning to surrender to what is...such a strong lesson regarding attachment...I have the tools....and yet...the feeling...ugh...so strong
Sunday, June 12, 2011
today has been a great day
what a great day today...tomorrow will be what will be ...will certainly appreciate another wonderful day...not waiting for something good ...just appreciating it when it does...LOVE is just the way it is...LOVE thank you for your love
Saturday, June 11, 2011
stable
stability is my friend ...one moment at a time is all I keep saying and it's all I can be and do and feel...so many positives...
Good news...we have been given permission to stay throughout the year instead of having to move in August...it's a HUGE relief...now...back to purging room to room and sending items to charity and the dump...over the next several months as I get stronger...the detox will be ongoing for a while...slowly coming down from them taking me back up ( the drugs)...g tube site is almost healed...fullness in belly is stable ...not gone just better than yesterday...I'll take it...
I miss everyone...I miss you ...I miss teaching ...I miss yoga in a group...I miss you all so much!!!!
I love you!!!
Good news...we have been given permission to stay throughout the year instead of having to move in August...it's a HUGE relief...now...back to purging room to room and sending items to charity and the dump...over the next several months as I get stronger...the detox will be ongoing for a while...slowly coming down from them taking me back up ( the drugs)...g tube site is almost healed...fullness in belly is stable ...not gone just better than yesterday...I'll take it...
I miss everyone...I miss you ...I miss teaching ...I miss yoga in a group...I miss you all so much!!!!
I love you!!!
Friday, June 10, 2011
not feeling well
not feeling so well since last night...stomach area feels full and detox symptoms seem to be more present...please send me strength...don't want to go down this road...
Wednesday, June 8, 2011
getting through the detox and chemo
I'm still having to take a significant amount of drugs so I can start to ween myself back down around Sunday ...will still be on some type of drug therapy for several weeks as it takes that long to detox ...the hope is for all drugs to be minimized. More diagnostic tests will be done the end of June...the best news is that I'm responding well to the chemo other than my feet.
As medical bills keep coming in I am reminded how incredible the community has been in regards to the donations most recently...it's the only way I have been able to survive...I have to continue to trust that all will be provided for...the act of giving and receiving will be honored and as I continue to love and give ...it will also come back around for me as well...
I have done well with the 3rd cycle of chemo...I could share small details of this and that but overall...I'm ok in this moment. My feet are slowly improving...my g tube site is healing...the hardest part is staying in the moment...the what ifs start to enter my brain and the suffering begins to scream at me...I know a lot of my feelings are the intense side effects of the drugs...
it will be ok..thank you for your love...I can't say it enough...please know I'm always here for you too!
I'm still on the TPN...liquid nutrition...so now I'm down to one bag attached to my body 14 hours per day...then I get a little freedom...I was attached to 3 tubes/bags...very grateful for that freedom.. I have also been adding a little bit more food...just a wee bit...organic baby food...purred soup ect...just a few spoonfuls...the plan is to come off of the TPN too!!! I just have to be able to replace 1300 calories with adequate nutrition...
Until the next report...love love love every moment...love love love
As medical bills keep coming in I am reminded how incredible the community has been in regards to the donations most recently...it's the only way I have been able to survive...I have to continue to trust that all will be provided for...the act of giving and receiving will be honored and as I continue to love and give ...it will also come back around for me as well...
I have done well with the 3rd cycle of chemo...I could share small details of this and that but overall...I'm ok in this moment. My feet are slowly improving...my g tube site is healing...the hardest part is staying in the moment...the what ifs start to enter my brain and the suffering begins to scream at me...I know a lot of my feelings are the intense side effects of the drugs...
it will be ok..thank you for your love...I can't say it enough...please know I'm always here for you too!
I'm still on the TPN...liquid nutrition...so now I'm down to one bag attached to my body 14 hours per day...then I get a little freedom...I was attached to 3 tubes/bags...very grateful for that freedom.. I have also been adding a little bit more food...just a wee bit...organic baby food...purred soup ect...just a few spoonfuls...the plan is to come off of the TPN too!!! I just have to be able to replace 1300 calories with adequate nutrition...
Until the next report...love love love every moment...love love love
kind words from James Donavon
Another beautiful expression from James Donavon...haven't met him in person yet...it feels like I've known him a lifetime...
"Just want you to know, I'm with you on every breath with the conviction that persistence such as you've been showing for so long will soon be rewarded.
Like getting a jet airplane off the ground, it takes so much torque to provide the necessary lift...which can be achieved only when that level is reached.
I sense that the necessary "lift" for you is finally at hand.
I could say hang in there, but that is second nature for you.
Remember, it's always darkest before the storm.
Rainbows and blue skies are in the forecast for you.
Every day you are a day closer.
If this appears to be a miracle, it's really not. It's just another example of how the human spirit and persistence can combine to triumph over any adversity!"
Admiringly yours,
Jim Donovan
"Just want you to know, I'm with you on every breath with the conviction that persistence such as you've been showing for so long will soon be rewarded.
Like getting a jet airplane off the ground, it takes so much torque to provide the necessary lift...which can be achieved only when that level is reached.
I sense that the necessary "lift" for you is finally at hand.
I could say hang in there, but that is second nature for you.
Remember, it's always darkest before the storm.
Rainbows and blue skies are in the forecast for you.
Every day you are a day closer.
If this appears to be a miracle, it's really not. It's just another example of how the human spirit and persistence can combine to triumph over any adversity!"
Admiringly yours,
Jim Donovan
Monday, June 6, 2011
preparing for chemo #3 tomorrow
There is so much to share and I don't know where to begin...I'll start from today and try to work my way back...
Friday ...it was determined by hospice that due to the trauma of my arms and the g tube removal that coming off of the pain meds sub Q with ongoing dilaudid being delivered was no longer a viable option...one reason is that the tube was most likely causing the deeper pain and number two...my arms were not holding up to keep the needle in and the inflammation was becoming too much. So to switch to oral medication has now become the preferred medication as long as I can keep things down...even if that were to change I have a pain patch on to offset the pain..
So Friday at 11 am I went off of the pain pump and was given instructions on how to proceed with oral meds...they fully expected me to have intense pain and so therefore did not prepare my next few days for withdrawal symptoms...I had talked about withdrawal concerns numerous times but for some reason they thought the expected pain would negate the worry of that...after 9 hours I didn't have pain but I went into intense withdrawals from dilaudid and with the hospice team and my dr and friends...brought me back up to enough pain meds to slowly bring me back down again...there is so much to the story and not enough energy to explain it in detail...I'm still in the detox phase now ...feeling better than I did...quite a ride...what seems like common sense...what seems so obvious...is not what I'm experiencing with the experts...mysterious and bizzare!
I don't quite know what to say to explain how it feels to be in my body having these experiences...I have decided to dedicate my pain to the young man 13 yr old boy in Yemen who was mutilated and tortured..I'm dedicating my pain for his pain...what he and others like him have had to endure ...as bad as it has been for me...all we have to do is read or listen to the news and we know it can always get worse ...there has to be a compassionate exchange and support for what is happening...the ultimate burning of karma ...the burning of all that is no longer needed ...how can you speak in words what appears so horrific?
As I walk into chemo tomorrow I will honor what is given to me...what experiences are happening to me and around me... perceived for me or against me is not how I can manage...I have to surrender to what is...
Dr. Bahahdor told me that he has never taken a G tube out once it's placed ...especially in my situation...most people are close to passing or they live with it for several years...what the future holds regarding a tube in or out...I do not know..just to come to this place is already a mini miracle...he also said that the level of improvement is extraordinary...I appreciate what he says...I still have to stay in the moment ...every moment changes so quickly...every mistake...every success...it's overwhelming. I know I have made it this far due to the love that is surrounding me...the friends whom spend the night to care for me ....to give me pills every 2 hours...to check on me...to hold space for me here or there...it's all about the amazing energy that is healing me...
I'm limping on my left ankle...inflammation from my feet ...the pain is still uncertain...it's not easy to understand the answers...or even the questions.....I have so much love inside to share ...I can feel myself teaching again...I can feel the possibility of driving my car to teach yoga...I can see I have some more time...
We are waiting to hear about the details of having to move...once that is understood...I will be reaching out to those of you who have so eagerly offered to help me...I will be needing so much help ...more help than ever before...the moment I know what to ask for I will be communicating....For now...
continue to breath through this detox with me...thank you for all that you are so willing to share and do and be and the caring...the depth of caring is merit that will bless you in ways you will never truly grasp....help me with your intentions...not to grasp or cling to what I think I need...help me to surrender with as little fear as possible...what is coming is coming...one step one moment at a time...send love to people who make decisions on my behalf...My current landlords ...breathe in humanity and fairness and all those things that help us do what is good for all...I know goodness is out there...I mostly see it...
Stay with me as I am with you...supporting and loving you all the way!!!!
Friday ...it was determined by hospice that due to the trauma of my arms and the g tube removal that coming off of the pain meds sub Q with ongoing dilaudid being delivered was no longer a viable option...one reason is that the tube was most likely causing the deeper pain and number two...my arms were not holding up to keep the needle in and the inflammation was becoming too much. So to switch to oral medication has now become the preferred medication as long as I can keep things down...even if that were to change I have a pain patch on to offset the pain..
So Friday at 11 am I went off of the pain pump and was given instructions on how to proceed with oral meds...they fully expected me to have intense pain and so therefore did not prepare my next few days for withdrawal symptoms...I had talked about withdrawal concerns numerous times but for some reason they thought the expected pain would negate the worry of that...after 9 hours I didn't have pain but I went into intense withdrawals from dilaudid and with the hospice team and my dr and friends...brought me back up to enough pain meds to slowly bring me back down again...there is so much to the story and not enough energy to explain it in detail...I'm still in the detox phase now ...feeling better than I did...quite a ride...what seems like common sense...what seems so obvious...is not what I'm experiencing with the experts...mysterious and bizzare!
I don't quite know what to say to explain how it feels to be in my body having these experiences...I have decided to dedicate my pain to the young man 13 yr old boy in Yemen who was mutilated and tortured..I'm dedicating my pain for his pain...what he and others like him have had to endure ...as bad as it has been for me...all we have to do is read or listen to the news and we know it can always get worse ...there has to be a compassionate exchange and support for what is happening...the ultimate burning of karma ...the burning of all that is no longer needed ...how can you speak in words what appears so horrific?
As I walk into chemo tomorrow I will honor what is given to me...what experiences are happening to me and around me... perceived for me or against me is not how I can manage...I have to surrender to what is...
Dr. Bahahdor told me that he has never taken a G tube out once it's placed ...especially in my situation...most people are close to passing or they live with it for several years...what the future holds regarding a tube in or out...I do not know..just to come to this place is already a mini miracle...he also said that the level of improvement is extraordinary...I appreciate what he says...I still have to stay in the moment ...every moment changes so quickly...every mistake...every success...it's overwhelming. I know I have made it this far due to the love that is surrounding me...the friends whom spend the night to care for me ....to give me pills every 2 hours...to check on me...to hold space for me here or there...it's all about the amazing energy that is healing me...
I'm limping on my left ankle...inflammation from my feet ...the pain is still uncertain...it's not easy to understand the answers...or even the questions.....I have so much love inside to share ...I can feel myself teaching again...I can feel the possibility of driving my car to teach yoga...I can see I have some more time...
We are waiting to hear about the details of having to move...once that is understood...I will be reaching out to those of you who have so eagerly offered to help me...I will be needing so much help ...more help than ever before...the moment I know what to ask for I will be communicating....For now...
continue to breath through this detox with me...thank you for all that you are so willing to share and do and be and the caring...the depth of caring is merit that will bless you in ways you will never truly grasp....help me with your intentions...not to grasp or cling to what I think I need...help me to surrender with as little fear as possible...what is coming is coming...one step one moment at a time...send love to people who make decisions on my behalf...My current landlords ...breathe in humanity and fairness and all those things that help us do what is good for all...I know goodness is out there...I mostly see it...
Stay with me as I am with you...supporting and loving you all the way!!!!
been in detox
came off pain pump medicine and transitioned to oral medicine...Have been in detox since friday mid day...will explain more details about everything ...sorry about the delay in communication...still coming out of it...will connect soon...in the meantime...wave your magic wand as life continues to show me many possibilities of pain and challenges and then right in the middle of it ...good things too...connect soon ....so much love
Thursday, June 2, 2011
does it ever let up?
My pain pump needle site started bleeding today...nurse just came out to fix it and change it to the other arm again...I just need a few days to catch my breath...g tube site is still good...I'm responding well from having it removed...just found out a 30 year old woman is signing into hospice with the nurse who came to help me...she had kidney cancer 3 years ago...was with hospice...went into remission...left hospice...now the cancer came back and spread ...she doesn't have long to live...so many of us wanting to stay alive...wanting to share with our loved ones...I just feel love...it's all about love...it's the nourishment I need to receive and the nourishment I must give...LOVE
Wednesday, June 1, 2011
tube is out
the details of the day I will share later...for now...I'm home tube free and resting...it was a long emotional and painful day that turned out positive...so many of you have asked about how it went...so far so good...will share more later...love to you
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