Tuesday, May 31, 2011

not until tomorrow

Just found out that I can't get  my appt until tomorrow...Wed at 10:30 am...I'm sure it's the universe carving out the just right person and the just right environment to allow for a safe and successful release from the g tube...today is just not meant to be...breathing in and out a pain free pause ...stability...stay with me ...

finding my way

Yesterday was an eventful day. The pain continued and it didn't seem like the pain medicine was working. As it turned out...I wasn't receiving the full dose...due to the extreme pain that the g tube is causing...it wasn't enough...I didn't realize the needle site in my arm to receive the pain meds was inflamed...it wasn't allowing full transfer of medicine. This was going on since friday and it caught up to me and the intense pain returned...fortunately I had oral pain meds and also some was getting through...The hospice nurse came over yesterday afternoon to help me with this...while she was here we discovered that the g tube had slipped out by a few inches...not good...so...she had to push it back in and tape it down...not great for pain either...I'm currently waiting for an appointment at Sharp Memorial Radiology to take out the tube. It appears I may be able to take it out without the risk of vomiting since I have successfully been clamped off from it for almost 5 days...good sign that I may not need it...the other good thing is if it currently is the source of the pain I'm having...then the pain pump can go away and I can take oral pain meds as needed ...we just have to wait and see how my body responds.Hopefully the g tube will be removed and I'll be back home tonight...


What can I say to express where I am right now???? I'm really scared...it's true...I'm really scared...I'm really scared...I know how to breathe in the tools for my body to recognize strength...to recognize bravery...to allow for this experience to once again become another experience...

For now...please breathe with me...breathe with me...

I love you

Monday, May 30, 2011

i have extreme pain today

Since 7am this morning I have been experiencing intense pain around the belly tube site g tube...it feels like it's dislodged again...how...I have no clue...I'm holding on with pain meds but barely...Please use your love and healing magic and send me a pain free g tube...it's on the upper left quadrant ...not sure what the next step is if it doesn't let up...using my reiki and qigong practices to help...

yesterday ...I had an amazing experience with a young woman who came to help me with the electronics..her kind words ...her tenderness was palpable...what a gift..a stranger walks in the door and gives and gives and gives and then engages me in raw innocence!! Thank you!

Maybe the love can help me with this pain....

Sunday, May 29, 2011

reaching out for someone with sound recording experience

My husband needs help with a software program called " Audicity" sound recording software" for a podcast...he needs someone who can tutor him...need help ASAP...please email me at theinnerhouse@gmail.com and or call me at 760-707-7610...thank you so much!!!

Saturday, May 28, 2011

feeling some healing

the last few days have revealed new markers of improvement ...truly learning to allow what is to just be that ...not to measure good means good and bad means bad...just learning to take it all in as this is the experience I'm having today or this moment...it's a feeling inside that I can't always trust 2 plus 2 equals 4...there is a sense that there is another perception...another knowing...that what we think we know is not really all that true or meaningful...sharing love always

Friday, May 27, 2011

thankful for today

Thank  you to a friend of a friend who is coming over Sunday to help me recycle some electronics...if it's worth it...otherwise..I'll find a great passage to another owner ...


I had some news today that was uplifting ...I'm making a tiny bit of progress and it's enough to raise my spirits!

So much love swirling around...feeling it...breathing it in...

Thursday, May 26, 2011

one foot ...then the other

last post I had mentioned that I need help sending electronics to a recycling company ..the company is called "Gazelle" I heard this is a great place to send back used equipment and be paid for it...I have cameras...old cell phones  etc. I need help from someone who is very savvy with this sort of thing...anyone??? Email me at
theinnerhouse@gmail.com or text me @ 760-707-7610...it would be great to have that project behind me.

Taking breaths ...breathing in every moment of this experience...it's a place that I can't relate to and yet I'm here...I just stay with the breath...experiencing Tonglen for myself and the world...breathe in the pain breathe out peace...breathe in the fear...breathe out peace....breathe in uncertainty breathe out patience...breathe in love breathe out love ...breathe in love breathe out love ...breathe in love breathe out love...and so it goes....

Wednesday, May 25, 2011

purging and releasing

Thank you to a friend who came and picked up a small truck load of charity goods to give away..small little projects help to let go and accomplish so much...so many of you are offering...no worries...I will need your help for sure..it helps also for someone to call in the morning and say I can come today offering a block of time and or the day before...I'm having a hard time planning and not planning...it's just the way it is...for now ..I don't have anything just sitting in a pile waiting to go out...so I can pause that for the moment...as I get closer to moving I'm mostly concerned about the garage stuff and that is when I'll need to have the dump runs ect...I continue to go room by room letting go of what I don't want to move with me...I know it's not until August but due to the circumstances, If I don't organize ongoing starting now...it will be a disaster.

I have old electronics that I could use help with...I know there are websites to send old stuff for sale ...if someone who is savvy on the computer and with internet sites to help me send things that is a good project...

My feet are extra painful today...walking around very carefully...

I reunited with a friend today and that felt wonderful...

enjoy the rest of this beautiful day

Monday, May 23, 2011

some improvements

Over all I have had less pain...the g tube site ( belly drainage) area is the main cause of irritation and pain...I  sometimes have to take extra pain medicine for that reason.

I  have experienced side effects from this particular chemo called hands and feet syndrome. The main pain is at the bottom of my feet and it looks and feels like chemical burns. The pain is from the inside out due to the medicine leaking out into the tissues. The pain is similar to burning from walking over hot coals...they look like calluses or blisters ...I have researched different remedies and currently feel a slight improvement ...my next chemo will be less in the amount and will be delayed a few days to allow for healing. This side effect is so painful that I must stay ahead of it to avoid stopping the chemo. I have been able to walk in the morning and afternoon...wrapping my feet carefully so I can walk without too much pain...the walks can last sometimes an hour or more. At first the walking pace was scary slow and now there is obvious improvement. I can walk up and down my stairs with more strength as well.

I have also experienced the urge to have bowel movements again and that has been an interesting unfolding...not easy and sometimes painful and odd...not sure I can explain it. Over all it is positive...except for the hemorrhoids.

I'm starting to understand the hospice scheduling...it's not easy but it's the way it is...I  will have to stay flexible with visitors coming and people helping me ect. Sometimes there will be overlap.

I'm going room by room trying to purge anything that is not wanted or needed.. I need help with taking trips to the dump and to pick up smaller amounts of give a ways to charity ...I want to do it in smaller increments so I can clear as I go as I don't have any option to store piles of things...I have a few piles now that need to go to charity...some of the trucks require you to be more organized and some refuse certain items..I have lots of books that could go to a library or to ??? I also have a broken down large trampoline that needs to go to the dump..if anyone can help me out that would be great...whatever can be donated would be great and whatever I need to pay for can be worked out. Supposedly we have to move in August...I have to truly start now so I only move what is needed and wanted. I'm taking this time to organize myself as much as possible.

I will be able to start offering a few visits/ getting things done as we visit time...I appreciate your patience with all of this as I'm learning to understand and adapt to what is happening.

Thank you for your love and your healing thoughts...I have never been in this place before...even with the past surgeries and fear that came up during those times...I have faced death many times and it just didn't happen. All I know to do is to just step one foot in front of the other ...the doors that open and the doors that close are only controllable to a point. The hospice team says it's about what I want...if I could have what I want I would be well again and teaching and appreciating my freedom so I could do my life's work...so I could rest in the dharma of my path...so what I want is not what is happening to me...it just is...I have to be able to adapt to what is...it's happening anyway...whether I want it or not...how do you reconcile with that? How do you reconcile that the only way I can stay alive is because a friend spends the night every night to care for me...to clean my wounds ...to care about the navigation of my pain and the way the tubes and bags fit onto my body...the way my husband every night...prepares IV nutrition...I have to pause and breathe and appreciate every moment I am given...to appreciate the profound gifts that have contributed to my well being...friends and husband who have not left my side until they knew it was ok...missing their own lives to keep mine going...what do you do with that??? What do I do??? I'm in a place I have never been before and I just have to trust that I am given what just is...what experiences are for my growth...for others to grow...I'm not sure about the answers to WHY...I'm not sure when or how this will unfold...I just know for now this is happening...I'm fucking scared and then I'm at peace and then it swirls again...love to everyone for without love there is no purpose.

Thursday, May 19, 2011

staying in the moment

Hospice says it takes about 2 weeks to adapt to how they schedule their appointments ...I receive a call in the morning and someone from hospice schedules to come out that same day...it could be for just about anything...whatever I had scheduled..may have to change or we are here at the same time...it's a different way for me to live...I have a Dr. appointment with Dr. Bahador tomorrow (friday) mid day ...it will be interesting to figure out what to wear and how to carry all of this stuff with me...bags...tubing etc. I really want to begin to accept people coming over but I also need to combine it with help...I have the costco trip taken care of for now...

Love to everyone...see you soon

Wednesday, May 18, 2011

meeting with more hospice caregivers

one minute no one was coming to help...now...people are showing up whom i dont know...wow...love to everyone

meeting with more hospice caregivers

one minute no one was coming to help...now...people are showing up whom i dont know...wow...love to everyone

Tuesday, May 17, 2011

making progress

  • What a difference an hour can make...a few minutes...a comforting ...reassuring touch by a hospice nurse that we have a plan and she can help with the anxiety and confusion...even if it's for a few minutes.

  • I met with the hospice nurse today...I will continue to meet with her and another nurse 3 times per week or as needed . With the help of friends/caregivers, I'm learning to use new tools for this new way of living .Every moment is just that...the fear comes...the suffering comes when I wonder about the next moment. The strength and the love comes when I can relax .

If I  shared with you all that we have to do to keep this going it would overwhelming to read it...however...we are adapting the best we can. It's only been 3 days since I left the hospital....time is tricky when you're uncertain.

  • If at all possible, Please read the blog prior to your visit so  we can be on the same page right away. It would also be great if we can combine visiting with the volunteer help you wish to contribute unless it's just a simple visit. The less I have to answer the same questions over and over the better..it's amazing how tiring it is just to visit. 

  • There have been some requests for visits this week starting immediately and I think it would be better for me to not schedule too much too soon as I meet with the caregivers this week...there is so much to do and so little time to do it by the time I have met with just the basic needs.


  • I am well supplied with books and magazines so no worries on those things...

I will need someone to go to costco and home depot and will reach out in the next few days as I gather my list and the people who have offerred.

  • Today ...my pain patch was eliminated and the sub Q ( beneath the skin) pain pump dosage was increased to compensate for the changes. I feel extremely medicated right now as I adapt to the changes. Hospice has been extremely helpful with pain management so far. Such a relief !
  • A second nurse will be coming shortly to help with the IV nutrition that was put into place a month ago....this will be ongoing and very helpful!

Summers Hope www.summershope.com is still up and running and the money that has been raised is going directly to paying my bills. I wish I could show you the cards..the money ...the gifts that are making their way to me...the rolled up pennies...it's been amazing ...those of you who have held fundraisers have become my true angels and the love you must feel helping another is beyond description...this is truly the time where words are not enough...nor ever will be...with my limited communication of the English language...I still want to say thank you

With so much love,
Summer

Monday, May 16, 2011

delay

I was supposed to have met with the hospice team today...there is a slight delay in organizing from the hospice end of it...I haven't really met my team yet...it's a delay that makes it challenging for me to schedule people to come and visit...I need to stay very flexible...I appreciate the incredible amount of love pouring out offering to help and I do need it...please continue to offer as I may forget to contact you as I adapt to what is happening...I feel every emotion possible and I feel strong and I feel very bizarre...out of body...there is so much I need and yet I don't know what to do next...I will be a bit more organized as the week unfolds...thank you for your patience...I feel so much love and I know I will be cared for just right. I carry my life around in 3 bags...one has my nutrition ...one has my pain medicine and one has the belly tube ( g tube) bag to empty bile from my belly...it's a juggling act that I'm trying to get used to...I'm grateful to be alive and to have the pain managed so much better than it was...there is no comparison...

I feel your healing presence...I welcome your love...have a beautiful night on this full moon ...May we all learn the depth of love from all experiences but particularly the experiences that tests us on all levels.

I don't want to confuse anyone with my email address...someone said my blog has the wrong address: the correct address is...

theinnerhouse@gmail.com...not sure how to fix it or where it is...if someone can let me know I can try to correct it...

Sunday, May 15, 2011

mad it through the night

will share more as I can...made it through the night...won't meet hospice nurse and case worker until tomorrow...trying to find our way here as we navigate new territory...not easy...
Those of you reaching out offering to help ...please leave your phone number either my email www.theinnerhouse@gmail.com or face book or blog...

Thank you so much

Saturday, May 14, 2011

back home

Dear Friends,

I just got home and was anxious to communicate since my computer didn't allow me to blog since the last blog. I have much to share but for energy purposes I'm too drained to share everything now...I was brought home today under the care of Sharp Hospice. This will give me the resources I need and be able to still have care with Dr. Bahador. I will need lots of help from other friends who feel they can come and help out  a lot or a little...it could be simple things or more complex things...basically, I need your help. I need to get settled in the next few days and see what the care is about with this program. I have to learn so much and yet I'm so medicated that it's hard for me to remember. Please be patient with me as I learn to ask for your help. I feel such love and appreciation for so many whom have been with me this past month...in person or far away...I need your support. I don't know about working for a while...it's too fragile of a time for me to commit to anything other than moment to moment. I love you all so much and as vulnerable as I feel right now...I also feel strong...the pain meds also make me extra sensitive so I may not fully grasp or remember what you tell me...I may be overly sensitive so I need your help with that...I will communicate more and more...I have so much to share as time goes along...please know I love you and need you and value you more than ever!

With deep sincere love,
Summer

Sunday, May 1, 2011

pain has become too intense

heading back to the Er...pain is insane....can't seem to get relief other than moments following pain meds...never experienced pain like this before...moments at a time is all I can do...I need a magic wand...all I can do is to breathe for all the other beings who are in this much pain or worse...it's unbelievable pain....love to all...will do my best to update you on my blog...I love you

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