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.