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View Diary: She will be coming home tomorrow (113 comments)

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  •  So glad she is coming home! (15+ / 0-)

    It's so much safer than the hospital!  And the kittehs will be a comfort for sure--I long ago found a cat heating pad was the best therapy for back pain.

    Interesting you should quote Julian of Norwich--when I was dying last winter, quite literally, her words were an almost continuous mantra for me (sense and non sense and yet so true).  I was talking about dying with our rector and she asked what words I had when I thought about it.  When I quoted Julian she said I had learned to live without fear, in the center of the spirit.  And that is where I think Julian lived and am humbled to have touched a very small part of her faith. And in several ways the words were true and I got a reprieve, although the time it took was much more than I had imagined.

    Please know I live fairly close to you (in Alexandria VA) and I would be very pleased if at any point I or my spouse could be of assistance to you or Leaves.  Also, I used to work in drug development for chemotherapy and am familiar with many of the drugs, mechanisms and side effects (and am still a pretty good mechanistic toxicologist)--and happy to research other agents if you need information on anything. (Well informed patients and spouses do best; that I am sure of).  The most important thing to remember scientifically is that statistics can tell you the odds, but the better informed you are the more you can influence the odds.  And statistics do not necessarily predict the results for the individual.  Please Kosmail me if I can be of any help; I promise to honor Leave's requests for confidentiality.

    The best news is in the last several years I have seen some true medical miracles as treatments for many cancers are being  tailored to respond to individual biology.  it is important to know whom to contact, because some of these developments are in early clinical trial phases and limited to only a few institutions.

    One of the best books I can recommend is Bernie Siegal's "Love, Medicine and Miracles." Siegal was (is?) an oncologist who dealt often with serious cases, and his book shows the human spirit in its power and fraility, and intersection with the divine--however one conceives of this.  (And no, he is not one of the creeps who thinks if you think positive enough you will heal, meaning if you don't heal you have not complied as a patient or tried hard enough.)  I found his book very helpful, also an audiotape "Meditations for difficult times"  (avail on he made.  It's very unsentimental and surprisingly reassuring at the same time.  

    Another book I loved was Gilda Radner's "Its always something."  Her take on cancer, though extremely painful in outcome, was hysterically funny.  The quote I  really loved was "Though I walk through the valley of the shadow of death I don't have to build a condominium there."  

    I think Leaves has in you a wonderful support system.  You may have to help her see at times that expecting to be 100% coherent and working from home is not always practical due to the stresses chemo imposes on the mind and body.  But those stresses do not mean forever, but are a message to rest and heal.  

    I know when I went into the hospital a year ago I was working up to 2 hours before major surgery (really!), and I did not appreciate the time it would take to heal and become truly conversant again with materials that had been 100% familiar.  It did happen, but you should be prepared to deal with the frustrations that a bright and active mind (which I am sure Leaves has) in coping with the mental disorientation and "fog" that is the result so often of current day chemotherapy.

    I thank you so much for your updates and hope you will Kosmail me if I can assist in anyway.  I have learned a huge amount from your blogs on teaching, and now, from your postings on dealing with serious health challenges and the importance of love.  I send love to you and Leaves and hold you both in the light.


    Democrats give you the Bill of Rights; Republicans sell you a bill of goods!

    by barbwires on Fri Feb 01, 2013 at 08:28:30 PM PST

    •  I thank you for this incredible comment (10+ / 0-)

      I really wish I could have submitted this and lots of others for top comments.  I am overwhelmed by how much others are sharing on the threads of these posts.  I am honored to have in some way provided the occasion for this.

      Be so kind as to connect with me by kos mail.  I may very well want to follow up with you.

      I apologize for not having done more than recommend this comment in real time, but I was very busy after I posted this diary in getting the room ready, and then spending most of her final night in hospital with my beloved.

      What is interesting is that the couple who helped me?  The husband works at least part of the time at the Hospice which is less than a block away (the other direction from the hospital), a place I know well because our community organization, on whose board I served, meets there and I have volunteered there.

      Our lives intersect with others in ways we sometimes never expect.

      Again, thanks for your comment.

      "We didn't set out to save the world; we set out to wonder how other people are doing and to reflect on how our actions affect other people's hearts." - Pema Chodron

      by teacherken on Sat Feb 02, 2013 at 04:44:34 AM PST

      [ Parent ]

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