tag:blogger.com,1999:blog-43469301490634373752024-03-13T00:06:58.273-07:00Suzy's Breast CancerSuzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.comBlogger136125tag:blogger.com,1999:blog-4346930149063437375.post-51964468890939827472015-09-30T13:17:00.000-07:002015-10-18T21:41:53.230-07:00We are terrible, mothers.<span id="goog_1494701719"></span><span id="goog_1494701720"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQGxeGtRWILPScBDi3PgRiufc3fkom5dDQgLtO_ZP12cVI7JFvJnIMkpacj77DZbMxmHukzZVV-7facDendXAMJgZiM6TDe0NWviJHCWgg9e6o8n4Y8YWWRCQZ6w2gDfMPf-UbmUlf-tGN/s1600/IMG_1632.JPG" imageanchor="1" style="font-family: Calibri; margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQGxeGtRWILPScBDi3PgRiufc3fkom5dDQgLtO_ZP12cVI7JFvJnIMkpacj77DZbMxmHukzZVV-7facDendXAMJgZiM6TDe0NWviJHCWgg9e6o8n4Y8YWWRCQZ6w2gDfMPf-UbmUlf-tGN/s320/IMG_1632.JPG" width="320" /></a></span><br />
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<span style="font-family: Calibri;">She was my first heart break.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">That sunny June Thursday afternoon, during a
family communion of tears and clasped hands over Pho in Seattle’s International
district, we heard the news - extensive mets throughout my lungs, liver and
skeleton, in particular my backbone.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">That evening, watching my 14 year-old
daughter at her 8</span><sup><span style="font-family: Calibri; font-size: x-small;">th</span></sup><span style="font-family: Calibri;"> grade graduation awards ceremony, my heart broke
into pieces and fell into sobs that extended to the bottom of my soul.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">My beautiful, powerful, formidable daughter,
a brilliant bud of personal power on the edge of what would surely be a bold, brave,
flowering adulthood.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And I was going to
miss it.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I was going to miss her.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br />
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<span style="font-family: Calibri;">First I worried.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I
fretted.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I needed to
protect/arm/push/correct her…</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Save her
from the pain of losing me, prepare her for a life where all of her personal
family relationships would suddenly be redefined and turned upside down, push
her to mature more quickly,</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">correct my
parenting mistakes, my flaws enacted upon her and through her….</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">She tried to reason with me.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">“Mom?” she said that September, as she went off to high school.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">“I’m sad you have cancer and I feel sorry for
you, but it’s really your thing.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">It
doesn’t really affect me.”</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">It has taken me a full year to understand the wisdom of her
words.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My first response was to push harder. </span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I was more direct.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Taking her to lunch so I could confront her
with my cancer.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Telling her that her
dying mother’s request is that she seek therapy.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Forcing her on a mother-daughter trip to
Oregon and pushing into her face the “wisdom” I wish I had known before walking
my own mother to her death last November.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">“It doesn’t matter what you do, watching someone die is
horrible.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">You will always think there
was something you could have done differently or better, no matter how hard you
try.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">You will always feel a conflicted
collection of love, frustration, fear, grief, guilt and even disdain towards
your loved one as they die.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">It’s just
hard.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I want you to know everyone feels
that way.”</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My 15-year old’s face was frozen, her eyes blinking back
tears.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I need you to do therapy because I need you to grow up more
quickly, I tell her. </span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I need you to be
ready to do your part to deal with how everyone’s needs are going to change.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We all need to be ready to be a bit more for
each other. </span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">(I want her to grow up more quickly so I can feel connected
to her again, I tell my therapist.)</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">She has a big robotics meet on her birthday.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Parents are bringing food for the kids’
lunch.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I bring a couple of huge sheet
cakes that say Happy Birthday, Delphine.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">She’s so mortified she can’t stand to stay in the lunch line.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She walks out.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I leave in tears so heavy I can barely see out the front
windshield.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">A piece of my heart has been
cut out.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">(I wanted to love her and all I did was hurt her, I tell my
therapist.)</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">What are you so anxious about?</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Why do you pick at her so much?</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Asks my therapist.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I had thought of myself as proactive, forward thinking …mothering
– not anxious and picky.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My myth</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I’m worried about her ability to be happy, to connect and
nurture friendships at 15.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Who is really
connected to anyone else at 15?</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Reality</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I see her joy and laughter in the company of her new high
school friends, her dedication to her goals, her conscious, successful strategy
on finding and nurturing a new community around herself.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I wonder in amazement (and annoying motherly approval) at
her ability to analyze our relationship and communicate to me what she finds
disturbing.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">This is not a young woman who will have difficulty nurturing
and maintaining relationships as an adult.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My myth</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I’m worried there won’t be anyone she’ll let hold her, to
carry her when she sobs with grief.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Reality</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I’m grieving that I am no longer the person she turns to to
hold her when she is wracked with sadness or uncertainty. </span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My myth</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I’m worried that she will not remember our good times. .</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I worry that what we had when she was little,
Camp Fire trips, our cuddles, our big birthday party planning sessions, our
bedtime stories – our connection, my ability to hold her and calm her when
nobody else could – that these memories will be overwritten by these middle
school and high school years when I grasped and grappled and struggled to hold
on to her while she insisted on growing up and unfolding into her own person.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">What if this happens?</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">What if she can’t remember that earlier us? </span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">When I die, who will remember these precious
memories I have of she and I together?</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">Who will keep them alive?</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Nobody will. </span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">And there it is.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Nobody will keep my own precious memories of my life with
her alive. </span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Nobody will keep *my*
memories of any of the relationships I hold dear alive.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Each person dear to me will hold their own
memories of us.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">And that’s just how it is, in life or in death.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We each hold our own experiences and memories
of connection, joy, sadness, grief and love.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Death doesn’t change this.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My memories, my experiences, are mine.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">They live with me and they die with me.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">And so I mourn myself.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">For the first time, I actively mourn the loss of me.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My memories.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">My
experiences.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">My joys.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I had been striving for this imaginary relationship with my
daughter, an impossible relationship, where my needs and my losses where
suddenly appeased and released by some imagined adult re-creation of that
feeling I had when I cuddled her 2-year old head against my shoulder, a re-creation
of the endearing connected love I felt for my mother as she passed on.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I move my mourning back to where it is centered, me.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And there I work it and release it.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I free her from my imagined needs.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">And I see her.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">This amazing 15 ½ year old whose ability to tap into her own
honesty and insight allows her to now create writing pieces better than my
own.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">This amazing tenacious gritty
academic who hungers for challenge and walks determinedly through her tough classes and heavy list of outside commitments.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">This insightful and articulate observer of
human relationships, this poised self-aware maker of her own future. </span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I mourn her.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I mourn
her because she is 15 and growing up.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I mourn for myself because I am 48 and losing one of my
babies to adulthood.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Not cancer.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">And we are perfectly and authentically 15 and 48, daughter and
mother, glorious, just as we are.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">I’m
perfectly imperfect at mothering.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She
perfectly capable of being the whole, healthy person she is destined to be.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My issues with losing her are indeed my problem, not
hers.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">And cancer is not the problem.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Hers or mine.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Her memories are her memories.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Her future is her future.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Her path is her path.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Her losses and her joys will be just that,
hers.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Maybe we parents are wrong when we moan and groan about our
teens.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Maybe teenagers struggling for
independence and identity formation are not “the problem.”</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The problem is us, mothers.</span><span style="mso-spacerun: yes;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">We are tangled in our love and we are terrible.</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">And that will just have to be OK.</span></div>
<br />
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<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com1tag:blogger.com,1999:blog-4346930149063437375.post-79653718794291835142015-09-02T21:34:00.000-07:002015-10-18T21:38:38.178-07:00Hoisting the Cancer Backpack<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtXMSVlh5_gqlWwEzIIC12HafHqbVKBt64TA_9GQ0LNg13BRKaLWlceUnChnKw6d8K2jCcZaOZg538IWlMIq1kZBWk0_NL54uprLXrCH2mp1ZJUwrTmi6I6lj736dNGyVuMzkFSxK8k4FB/s1600/IMG_1142.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtXMSVlh5_gqlWwEzIIC12HafHqbVKBt64TA_9GQ0LNg13BRKaLWlceUnChnKw6d8K2jCcZaOZg538IWlMIq1kZBWk0_NL54uprLXrCH2mp1ZJUwrTmi6I6lj736dNGyVuMzkFSxK8k4FB/s320/IMG_1142.JPG" width="240" /></a></div>
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It's amazing how easy it is to hike when you don't have to carry a pack. The air seems lighter. The ascents don't feel so steep. </div>
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France wasn't just an amazing family trip. It was a vacation from cancer. </div>
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There's a cultural pattern to how Americans respond to evidence of my cancer. People are open, up front, sympathetic, caring and forward. My bald head is an announcement, a welcome sign to others who have walked the walk. And I benefit so greatly from this cultural perspective.</div>
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But I have to admit it was nice to spend 5-weeks in France, where the only clue to other's awareness of my cancer was a little bit more kindness and respect. The public reaction was so different from here that for five weeks, it was almost possible to believe I wasn't living with cancer, despite neuropathy that woke me at night and lungs that seemed to be on strike that first week. </div>
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Coming back to the U.S. was like settling in again to a heavy backpack. It's well worn and shaped to my body, so it's not uncomfortable. In fact, there's a solidity in it. It's weight reassures me of my strength.</div>
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But it's a bit heavy.</div>
Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-80032807748298457622015-08-26T15:23:00.000-07:002015-10-19T07:51:27.136-07:00Puppy Love<div class="MsoNormal">
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Getting a puppy while in treatment for cancer is a bit like
buying a puppy for Ch<span style="text-align: center;">ristmas. </span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXzfGjH2cEXfWfOwXzQVOpgmxLphaI-yqGEc-nqteB0ZLf6qTUGfvny3WtIlarh4yRn2MQfR6HcHi-WlYoGK6yFZTG9oSTM5mshvGcjq3fgPpl8uN2IhQ_NYmPcYbT8FbqOuGcFtQ95y9C/s1600/IMG_3612.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXzfGjH2cEXfWfOwXzQVOpgmxLphaI-yqGEc-nqteB0ZLf6qTUGfvny3WtIlarh4yRn2MQfR6HcHi-WlYoGK6yFZTG9oSTM5mshvGcjq3fgPpl8uN2IhQ_NYmPcYbT8FbqOuGcFtQ95y9C/s320/IMG_3612.JPG" width="320" /></a><span style="text-align: center;"> There’s
a clear and present danger of emotional magical thinking. Of the families I know that have endured
cancer or other terminal illnesses and ended up with the “cancer dog” about
half of those family placements have ended up being successful. (The other dogs were rehomed successfully and
happily.) Illness gets bigger and demands on the people involved become overwhelming. There just isn’t always the time needed to
train a puppy well.</span></div>
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So in the last eight months, since we lost Moby, our
horribly incorrigible and intimidatingly intelligent Beagle, I’ve been
interviewing my dog expert friends, interviewing my cancer surviving friends
and working a LOT with my therapist. I
have the time and the resources for a puppy right now. But
really, emotionally, why do I want this dog?<o:p></o:p></div>
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When my therapist asked this question, I cried.<o:p></o:p></div>
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When I talk about why I want this dog, it still makes me
cry.<o:p></o:p><br />
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<a href="https://www.blogger.com/blogger.g?blogID=4346930149063437375" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=4346930149063437375" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a></div>
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This dog will play with my son when I can no longer do
it. He’ll cuddle him to sleep. He’ll attend soccer games and celebrate
victories. This dog will be the constant
open heart my son’s own warm soul can connect to.<o:p></o:p></div>
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This dog will take walks with my husband. He’ll sit in love with him at breakfast or as
he works. He’ll pull him out of the
house and create that healthy irritating mess of living needed to bring him out
of his own head a bit when the kids are busy with their own lives and he’s left
with too many open spaces.<o:p></o:p></div>
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This dog will illustrate the nurturing power of my
daughter’s discipline and grit. She will
be our leader. And although her own
school life will keep her too busy to do the work herself (and she’ll leave for
college now much too soon), her consistent thorough thinking, planning and
carry through will guide us all through the consistency and heart needed for
good training.<o:p></o:p></div>
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Last year I bet on 12 months. I planned for 12 months of health to enjoy
travel and good friends and family. I
celebrated camping in Victoria, family at the Oregon coast, girlfriends at
Whistler, friends and family at Teatro Zinzanni, couplehood in Hawaii, my son
in Disneyland, my cousins, aunt & uncle in the Philly area, family and
stage IV heros in New York, my daughter in Oregon’s Rogue Valley and my
frenchie family in France.<o:p></o:p></div>
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18-months. I’m going
to assume I get 18 months healthy enough to keep training and caring for this
puppy. Puppy adolescence.<o:p></o:p></div>
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Because I’m not sure I’ll get enough healthy time to nurture
my own kids through adolescence, I am going to pour all of my love and motherly
nurturing into this dog so that he can keep pouring that love and nurturing
back into my family after I am gone.<o:p></o:p></div>
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Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com1tag:blogger.com,1999:blog-4346930149063437375.post-6282344313985465932015-07-23T15:19:00.004-07:002015-07-23T15:27:04.156-07:00The Purpose of Health<div class="separator" style="clear: both; text-align: center;">
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When a former student grabs my hands in the Bellevue College
Writing Lab and begs me to come to church with her because she is CERTAIN that
this will cure my cancer, I am touched.
I hold her hands tightly, look into her face and thank her for her care
and her concern – her distress, her need to help me, to do something, echos
deeply in her eyes.<o:p></o:p></div>
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When people came to me in tears, anxious and upset about the
news of my diagnosis, I felt honored, cared for. And I didn’t feel responsible for their
feelings or burdened by them. <o:p></o:p></div>
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But this is now.
Before my first cancer diagnosis, I was always quick to offer
unsolicited advice, solve problems that were not mine to solve. I didn’t see myself and others as being on
different journeys. I saw us all on the
same path…with myself in a slightly better position on that path, so therefore
something to offer everyone else. My
insight. My path. <o:p></o:p></div>
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But it’s not my experience with cancer that helped me cure
this. It was my journey exploring my own
Whiteness. Learning about how my
attitudes and behaviors linked back to my cultural privilege allowed me to
learn to see people and be more present with myself. Learning that my place on the pathway has
much more to do with the systems and networks that allow me to move to good
places than any kind of personal achievement, insight or behaviorhelped me stop
preaching and learn to listen. And now I
am a better teacher.<o:p></o:p></div>
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When a peer parent gives me a book about her Christian God
or another talks about her famous healer friend or a colleague tells me about
mushrooms that can offer a miracle cure, I used to be annoyed. Maybe it’s because that concern and distress
wasn’t so deeply apparent in their eyes.
They looked confident and assured.
Annoyingly knowing about something they know nothing about – MY journey. <o:p></o:p></div>
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So I’m still working on this privilege thing and my ease
with self-centeredness.<o:p></o:p></div>
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It took me awhile to teach myself to think of all of the
things people share as being artifacts of their own journey with mortality and
loss. And that changed everything. The book of inspiring Psalms becomes documentation
of a friend’s chosen path for her journey and learning. The healer is a door into a peer parent’s
deepest struggles with life and meaning.
The mushrooms, evidence of a colleague’s need to control her mortality
through a food path to pure living.<o:p></o:p></div>
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Looking back on my blogs over the last year, I realized even
the rants about pet peeves over irritating behavior are really deeply about
me. These are things I do and have
done. These are aspects of my culture
and my identity that pop out at me now and irritate me. Things I need to work on.<o:p></o:p></div>
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<br /></div>
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I am the culturally Christian woman who feels chosen and
somehow uniquely blessed. I am the evangelist
who chose food as a means to cure my parents lifestyle addictions after their
first heart attacks 25 years ago, to inspire my daughter with a sometimes
unhealthy attention to food and exercise, and to control my own mortality. <o:p></o:p></div>
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I remember when my mother planted an herb garden for me in
my backyard. She cleaned out a wooden planter, grey with
weather and age, on the edge of my cracked and mossy patio. Her herbs grew big and bold, overwhelming
the entire box of plants and melting into the “natural” landscape of our yard,
overgrown bushes, big old trees and a patch of brown crewcut lawn that has
been more weeds than grass for years.
For over ten years now this little garden has supplied the fresh flavor
I love so much in my meals and it seems to survive all abuse I can throw at
it. I’ve always hated gardening. The yard was always too big, too out of
control, too much work to even think about.
I would never be able to make it the manicured, mindfully constructed,
neighbor impressing yard I thought I needed. I love this overgrown herb garden in my messy
yard. It was the first time that I realized that gardening
is not about controlling life, but nurturing it.<o:p></o:p></div>
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I am seeing a therapeutic masseuse to help deal with a
strangely swelling right buttocks. My masseuse and I share a lot in these
sessions. There is something about
laying naked with another person’s healing hands on you that creates an
immediate intimacy, a comfort in vulnerability. For each thing I share, she shares back
something equally vulnerable and personal.
She creates a story of her own journey next to mine. It creates a space
for two full people.<o:p></o:p></div>
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<br /></div>
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She is currently working with three stage IV cancer patients. She talked about how vibrant and special each
of these patients is, how connected and caring, --and how unfair it seems. <o:p></o:p></div>
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<br /></div>
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Death isn’t unfair.
And having cancer can be a great way to go, considering other
options. Many of us get to experience
health and some amazingly intimate, happy time with our loved ones.<o:p></o:p></div>
<div class="MsoNormal">
As humans, our risk of mortality is 100%, she agreed. But with all of the work she has done with
health, connecting the body, the mind, the heart – and growth. She felt it so unfair that people who had
attained such an inspiring place of growth and connection would have to leave
us when they still had so much more to share.<o:p></o:p></div>
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Individually, I don’t make a big difference in the
world. I have my shining moments and
some brilliance to aspects of my identity, but overall, I’m pretty averagely
flawed at most of what I do. My only
impact is in how I connect with others and how they go on and connect. <o:p></o:p></div>
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Maybe the purpose of all of that health, that internal
growth and connective mind/body/soul work isn’t about controlling mortality. Maybe health about something else than
avoiding death.<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYOJTkIlN1iVWVV0B-RomoAvzS2s3_2GinUcjmhdlMmZ8m721T7O4hEc_0GTRJxdf1lnVwOIEYYBAw1fk-Yg8Mj5bpOTnzFSUGUCDJvNXmRcbdC0ogtmZSTMcD9VqiSqi81V9htZHOeG2i/s1600/July21TumorMarkers.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="243" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYOJTkIlN1iVWVV0B-RomoAvzS2s3_2GinUcjmhdlMmZ8m721T7O4hEc_0GTRJxdf1lnVwOIEYYBAw1fk-Yg8Mj5bpOTnzFSUGUCDJvNXmRcbdC0ogtmZSTMcD9VqiSqi81V9htZHOeG2i/s400/July21TumorMarkers.JPG" width="400" /></a></div>
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P.S. A mere hour after writing this post on an airplane headed for a long vacation in France I received news that my tumor markers have gone down yet again! Way to blow a moment. LOL.</div>
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Living with health AND your mortality pushed back a wee bit is pretty nice.</div>
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<o:p></o:p></div>
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<o:p></o:p></div>
Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com1tag:blogger.com,1999:blog-4346930149063437375.post-57528635762163753232015-07-20T09:52:00.000-07:002015-07-20T09:52:06.852-07:00Loving and Living! <br />
<br />
My days this summer have been filled with travel and outdoor adventure. Good books have been more tempting than computer keyboards -- so forgive me for abandoning you all! I will write more as we start our 5-week journey in France this week. But here's a quick photo update of my summer.<br />
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In addition to glamping on Orcas Island, rafting the Rogue River, eating and watching plays in Ashland, and cheering on the women's team for the World Cup, the boys and I have spent five or six days playing at Beaver Lake and are off to Wild Waves today. </div>
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We've not done a tumor marker test, but I feel great. I did have to skip one week because of low white blood cell counts and there was that whole issue around breaking a tooth and needing to remove it. I'll blog about that later. I'm getting a "big" chemo, a dose for three weeks, on Wednesday and then taking off to France for five weeks. I'll look at tumor markers and such when I get back. For now, I'm focused on living these planned experiences.</div>
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More soon!</div>
<br />Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-31393949837472106882015-05-29T11:34:00.002-07:002015-05-29T22:27:06.741-07:00Day Drinking? Don't buy more than one bottle of wine.<br />
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Look at that!? Descending tumor markers continue! I'm now at a measure that is below anything we've measured since the day I was diagnosed, in June 2014.</div>
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And you know what I did? I spent the Wednesday before chemo DAY DRINKING. My Wednesday appointments had to cancel -- and I have a clear memory of deciding, upon hearing that news, that I would get a bottle of wine and do some light afternoon day drinking.</div>
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I had these magical thoughts... thoughts mixed with guilt and a sense of control. If I drink, I will change the outcome of my tumor marker test. If I drink, I will change the outcome of my liver enzyme test. In testing my ability to change fate, there is hope and fear at both outcomes. Control ....would that be wonderful? And no control...isn't that freeing as well? And I'm so fucked up about it all.</div>
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I thought my drinking the day before chemo would cause my liver enzyme markers to rise (they went DOWN!) or that I would make my cancer suddently flare (LOOK! LOOK! Taxol is working!)</div>
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But I didn't day drink because of these tests or appointments. I was day drinking because with the consistent falling markers and the growing strength I feel in my body....I started trying to take action on the things that have frozen me. I had a contractor come in and give me an estimate on the work I want done on the house before I die. I met with a close friend who is producing some heartfelt work I want ready to present to my dearest and closest when my day comes. I talked to her about her own journey dealing with her father's death when she was still a very young and vulnerable adult.</div>
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Ramona Brandes just lost both of her parents. She was talking to me about how she can get distracted by nostalgia while she tries to make progress on getting her parents' estate in order. She described it as a distraction from the real emotions of loss and grief that lie underneath but are so much more disagreeable than nostalgia.</div>
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My journey, until now, has often been very cerebral -- nostalgic, even. And almost a YEAR after diagnosis, I'm finally getting around to doing the REAL stuff to prepare for my death (be it next year or in ten). I'm scheduling contractors. I'm creating artifacts for my dearest and nearest. I'm scheduling meetings with an estate planner.</div>
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To actually DO this stuff, rather than fantasize about it, is a completely different task. There is avisceral response, a bodily vomit and angst that overpowers my cerebal desire to dabble in nostalgia.</div>
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Being human is complicated.</div>
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<br />Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-64506182017509398322015-05-18T12:31:00.000-07:002015-05-18T12:44:05.543-07:00The Color of Hope<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwuvfeI6TX3eBGEs1YaxnmQXReGLsZ_fHu2FixSiIc6WBzNIXSfWzk901J0pcozJRDjbUSVCOBFlO8AGYDUhMepZKyrOWYy_X0GDkY4YRlXAL9jX0U0Z5fYbQY9LrVS-MbliS6bTR14_kU/s1600/WIN_20150505_194354.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwuvfeI6TX3eBGEs1YaxnmQXReGLsZ_fHu2FixSiIc6WBzNIXSfWzk901J0pcozJRDjbUSVCOBFlO8AGYDUhMepZKyrOWYy_X0GDkY4YRlXAL9jX0U0Z5fYbQY9LrVS-MbliS6bTR14_kU/s320/WIN_20150505_194354.JPG" width="213" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7EoEqEFPbKHs0ZrZpctO_pEDwF8giHnAh6blKZNa-MhQkWmPsxkTaUNAMuVxW1E06DUuDJEj-nBBULkiShYuXF2pLyZYFdqL9HKj5DMSsaaoy0C1U3WGpY9sNFs1_8ByOv4aoYteKkuFU/s1600/TumorMarker+27.29+May+8+2015.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7EoEqEFPbKHs0ZrZpctO_pEDwF8giHnAh6blKZNa-MhQkWmPsxkTaUNAMuVxW1E06DUuDJEj-nBBULkiShYuXF2pLyZYFdqL9HKj5DMSsaaoy0C1U3WGpY9sNFs1_8ByOv4aoYteKkuFU/s320/TumorMarker+27.29+May+8+2015.JPG" width="320" /></a></div>
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<span style="font-family: Calibri;">Novartis, a pharmaceutical company that produced most of the
drugs that kept me not only alive, but growing, healing, playing and rejoicing
last year, invited me to their blogger summit in New York City on May 5<sup><span style="font-size: x-small;">th</span></sup>.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">The women and men representing Novartis at this gathering
were clearly authentically engaged, inspired by the opportunity to work with
these women whose lives are improved by their company’s work – and in this
group, a small set of Stage IV and Stage III survivors who blog about their
illness,<span style="mso-spacerun: yes;"> </span>humbled and honored by the insight
available to share.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Every small push forward creates a few months here, a few
extra weeks there.<span style="mso-spacerun: yes;"> </span>It adds up.<span style="mso-spacerun: yes;"> </span>And the results are powerful.<span style="mso-spacerun: yes;"> </span>Four of these women bloggers have been
writing and reflecting on their illness for years – a privilege and a freedom
made possible by the treatment options and high quality care available.<span style="mso-spacerun: yes;"> </span>One woman has written and published a
book.<span style="mso-spacerun: yes;"> </span>Another is a Vice President of a
national organization to support women living with advanced breast cancer.<span style="mso-spacerun: yes;"> </span>Still a third runs an international nonprofit
which funds start up research ($40,000 annual grants) in treating metastatic
breast cancer.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">When we meet, we immediately begin sharing like reconnecting
lifelong friends.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">“After diagnosis I went through what I call my REFORM
period, you know, when I tried to drop all my bad habits,”<span style="mso-spacerun: yes;"> </span>she says with a cocktail in hand, “but then I
just realized I’ve got to live as me.” <o:p></o:p></span></div>
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<span style="font-family: Calibri;">“ME, TOO!”<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Around the dinner table the bloggers bond over shared experiences.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">“It’s hard to get people to understand what I’m going
through.<span style="mso-spacerun: yes;"> </span>I’m a sick person masquerading
as a healthy person.”<o:p></o:p></span></div>
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<span style="font-family: Calibri;">All heads nod.<span style="mso-spacerun: yes;"> </span>I’m
nodding, too, despite my bald head.<span style="mso-spacerun: yes;"> </span>(I’m
the only bald survivor in the room.)<o:p></o:p></span></div>
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<span style="font-family: Calibri;">I ask my sister-survivors to define “sick” for me.<span style="mso-spacerun: yes;"> </span>Did they mean that they feel ill or that
their prognosis is grim?<o:p></o:p></span></div>
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<span style="font-family: Calibri;">The chorus from the table is that latter.<span style="mso-spacerun: yes;"> </span>We all feel good.<span style="mso-spacerun: yes;"> </span>We just know that given current treatment
options available, we are all going to die from this disease.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">We laugh and cheer.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>We honor each other with respect and careful
listening.<span style="mso-spacerun: yes;"> </span>We share tips on managing
alcohol and chemo.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Almost as a case in point, one of our Novartis leaders
gushes next to me about how inspired she is by our optimism.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">I know the emotion she’s catching, the sense of sunlight and
spring breeze that floats among us at that dimly lit formal restaurant
table.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">There is a centeredness to each of us which clears the air
of the usual social anxieties.<span style="mso-spacerun: yes;"> </span>We are
women who have unfolded the prospect of our own death and walked into it.<span style="mso-spacerun: yes;"> </span>We wear our awareness – a heavy cloak that dampens
all the social crap that usually clouds the air between people.<span style="mso-spacerun: yes;"> </span>And when we have the time and space to be
still with each other, the air between us becomes clean, light, uplifting and
filled with life.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">The experience of wearing this cloak is different for each
of us.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">For the women heading up national non-profits, I imagine the
cloak grounding them, providing weight to their step and measured thinking
about their path forward.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">For some of us the cloak can be a shield, a protection
against misplaced priorities and pressures.<span style="mso-spacerun: yes;">
</span>Shedding my ego fueled concerns before learning to wear my own death,
felt precarious, fragile and dangerous.<span style="mso-spacerun: yes;"> </span>Vulnerability
felt like a raw open wound, skinless flesh.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">The embrace of death swaddles me, calms me in my own soul
and body.<span style="mso-spacerun: yes;"> </span>It keeps my gaze focused on
life and love at a present local moment.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">It’s like optimism without the frenzied hunger of hope.<span style="mso-spacerun: yes;"> </span>It’s like gratitude without the beholden thank
you.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">It’s the exaggerated slow dip and pull of a spoon filled
with incredible Tiramisu from your mouth.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Ich geniesse the act of living.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">It’s a heightened awareness of the capacity for light, love,
joy, connection, beauty, sorrow, pain and pleasure we are given in this world –
and appreciation and gratitude for our humanity.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">I like the security of this weight.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I am
content to walk with my sight on close horizons.<span style="mso-spacerun: yes;"> </span>There is plenty of beauty in this space.<span style="mso-spacerun: yes;"> </span>The laughter in response to my 10-year old’s
humor.<span style="mso-spacerun: yes;"> </span>The depth of friendship and
admiration with my lover, my spouse.<span style="mso-spacerun: yes;">
</span>The carefully hidden pride and wonder at my daughter’s emerging adult
self.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">So when my last PET scans results showed, for the first
time, a pretty uniform response to my latest treatment, I took pleasure in the
joy that result and the following descending tumor markers brought from my
friends and family.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">But I held tight to my cloak.<span style="mso-spacerun: yes;"> </span>It’s a data point and confirms my plans for
the summer will most likely hold firm.<span style="mso-spacerun: yes;">
</span>But the horizon doesn’t shift much.<span style="mso-spacerun: yes;">
</span>The path does not change course.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">There’s a strange isolation I feel in the joy I watch spread
among my friends.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">But then there were a couple of strange flappy arm and leg
events that I knew would have to be reported to my oncologist.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>It
was unusually easy for me to share these episodes with her.<span style="mso-spacerun: yes;"> </span>I had the worry (brain mets), but not the
anxiety.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">To not grasp at hope is not to be without hope.<span style="mso-spacerun: yes;"> </span>While I walk with my gaze as present as
possible, I still let the possible float – maybe I will see my son accepted
into Bellevue’s International High School next Spring.<span style="mso-spacerun: yes;"> </span>Maybe I’ll watch him start his new school in the
Fall of 2016.<span style="mso-spacerun: yes;"> </span>Maybe I will go with my
daughter to get her driver’s license next March.<span style="mso-spacerun: yes;"> </span>Maybe we’ll finally go on that
mother-daughter trip that SHE would like.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">These hopes float like colorful balloons behind me, just
beyond the periphery of my vision.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">So the MRI scan of my brain was just another data
point.<span style="mso-spacerun: yes;"> </span>Another rock on the same
path.<span style="mso-spacerun: yes;"> </span>A possible detour towards the same
horizon.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">I held my cloak close to me and discovered that people can
actually live long lives without their cerebellum.<span style="mso-spacerun: yes;"> </span>There’s quite a significant<span style="mso-spacerun: yes;"> </span>1-year survival rate for high functioning
brain mets survivors when whole brain radiation is used as treatment. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">Same path.<span style="mso-spacerun: yes;"> </span>Same
horizon.<span style="mso-spacerun: yes;"> </span>Just data.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">No anxiety.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">I felt light when Dr. Wahl called with the results the
following morning.<span style="mso-spacerun: yes;"> </span>Clear?<span style="mso-spacerun: yes;"> </span>No mets?<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">Awesome.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">AWESOME.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Wow. That’s really awesome.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">And I’m damn grumpy about it.<span style="mso-spacerun: yes;"> </span>It’s another steroidal weekend where my
husband’s voice is irritating in its light, velvet French smoothness.<span style="mso-spacerun: yes;"> </span>The swim suit clerk at Sylvia’s incurs my
wrath for suggesting three times I’m might be happier with a more padded lap
swim suit.<span style="mso-spacerun: yes;"> </span>The poor young life guard
gets the steely gaze of you’re-wasting-my-life for her inane <span style="mso-spacerun: yes;"> </span>lockerroom blather.<span style="mso-spacerun: yes;"> </span>The Pizza Hut manager gets a royal F*** over
the phone, which puts my son in tears, mortified his friend has heard his
mother’s inappropriateness.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">I lay in bed on Sunday morning, in the sunlight with my
partner and friend.<span style="mso-spacerun: yes;"> </span>We talk.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Suddenly my cloak has fallen away and I’m grasping those
balloons, I tell him.<span style="mso-spacerun: yes;"> </span>I’m holding
another family trip, a summer preparing for my son’s big journey into middle
school.<span style="mso-spacerun: yes;"> </span>I’m holding my daughter’s first
teenage job and the image of driving her, maybe, just maybe, off to her first
day of college in 2018.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">I’m unearthed, untethered, floating and turning.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">It’s just as emotionally difficult to let the horizon shift
out as it is to let the horizon shift in.<span style="mso-spacerun: yes;">
</span>In my hands I hold those hopes for the future so tightly I fear they
will burst with tears.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Slippery, maddening, glistening tears.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">So today I will go and swim in the warm sunlight…because it
feels like the color of hope.<o:p></o:p></span></div>
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Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com2tag:blogger.com,1999:blog-4346930149063437375.post-87094104001696834812015-04-10T12:32:00.001-07:002015-04-10T12:32:19.848-07:00Good News! <div class="separator" style="clear: both; text-align: center;">
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So what do YOU do the day after chemo? This morning I arose well rested at 5am. Greeted a fainting-while-vomiting daughter at 5:30. Taught the ten year-old how to care for a fainting-vomiting teenager while I went away to teach five hours. Next I'll shop for a BLOUSE because I'm taking a red-eye to Philadelphia and apparently everything my lovely soul-sista-cousin Kerstin signed us up to do has a DRESS CODE. Even the dang dining room at the old folks home where my Aunt and Uncle live.</div>
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A boobless woman shopping for a blouse is MUCH MORE COURAGEOUS than the spnning amusement rides and huge family gatherings I written about for previous steriod happy days. </div>
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The post-chemo highs are much less intense now. My oncologist cut the dose in half. But they're still strong enough to be fun. And the treatment seems to be working. Tumor markers are down! </div>
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I've been thinking big thoughts and planning out more interesting blog posts than this one. But I forgot that teaching online makes computer time feel less like time off. </div>
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Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com1tag:blogger.com,1999:blog-4346930149063437375.post-55878988225966428172015-03-31T15:28:00.000-07:002015-04-01T06:39:31.118-07:00Life and Death with Dignity <br />
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<o:p><span style="font-family: Calibri;"> </span></o:p><br />
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<span style="font-family: Calibri;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilCK4JfCpen_SzZ9aaUD_vyNVk7sybwnH78axzYH6Vl4Wa8_CJaOaQTNS5XaHiGZBJSz-8qtfqiF63CNy59iLovMhk6osZfOyBiBMdVU7RTZNkcFpRgQ_PUwqM03sxtm6MBJ2b5miq4pHU/s1600/WIN_20150322_194640+(2).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilCK4JfCpen_SzZ9aaUD_vyNVk7sybwnH78axzYH6Vl4Wa8_CJaOaQTNS5XaHiGZBJSz-8qtfqiF63CNy59iLovMhk6osZfOyBiBMdVU7RTZNkcFpRgQ_PUwqM03sxtm6MBJ2b5miq4pHU/s1600/WIN_20150322_194640+(2).JPG" height="224" width="320" /></a></span></div>
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<span style="font-family: Calibri;">I started therapy with Hemlata Mistry because a couple of my
behaviors had become unhealthy and I was at a loss when trying to change
them.<span style="mso-spacerun: yes;"> </span>Through good therapy and an open
heart and mind, I healed. <span style="mso-spacerun: yes;"> </span>I was in a
state of mental health when I was diagnosed with Stage IV Breast Cancer in June
2014.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">The thing about healing, though, is that you can always get
healthier.<span style="mso-spacerun: yes;"> </span>And unlike our physical
bodies, which are limited by the laws of Physics, we do not know how much mental
and spiritual growth is possible.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Because of health care reform I have unlimited
insurance coverage for mental health care.<span style="mso-spacerun: yes;">
</span>So now therapy has become a kind of preventative health measure for me,
a proactive move towards health as I walk towards death.<span style="mso-spacerun: yes;"> </span>It’s a weekly workout with a personal trainer
as we stretch, build muscle, in mindfulness, reflection, vulnerability and
love. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">For my entire life, I have been privileged with easy access
to communities of practice who devote themselves to this kind of work, scholars
of humanity and social justice. <span style="mso-spacerun: yes;"> </span>From
the bold brilliant heart that attracts and has attracted me to my very best
lifelong friends, to the discussions of language, power, beauty, justice and academic
activism taken up by my scholars of the humanities, to the painful,
frustrating, transformative work of social change marched forward by my colleagues,<span style="mso-spacerun: yes;"> </span>I am surrounded.<span style="mso-spacerun: yes;"> </span>I am stimulated.<span style="mso-spacerun: yes;"> </span>I am moved.<span style="mso-spacerun: yes;">
</span>Je suis eduque.</span></div>
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<span style="font-family: Calibri;">I arrived at 47 through a lifetime of reflection, some
documented in a 7-page academic resume and others in the deaths, in the last
decade, of friends caught by cancer in their youth.<span style="mso-spacerun: yes;"> </span>The deaths of my own parents.<span style="mso-spacerun: yes;"> </span>But the overwhelming majority of that
reflection is captured only in the hearts of those who have engaged with me. <o:p></o:p></span></div>
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<span style="font-family: Calibri;">My legacy.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">We are at a moment in our culture where modern medicine has
created a space for reflective cancer survivors, a peaceful interlude for
connection, intimacy, joy and gratitude.<span style="mso-spacerun: yes;">
</span>Thanks to some amazing drugs and treatment approaches, we get to have
some healthy, comfortable, cognizant time to connect intimately with our loved
ones, ourselves and our mortality.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>With communication technology, this has
created a web heart and wisdom we can share.<o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: Calibri;">My favorite shares
this last month:<o:p></o:p></span></b></div>
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</span></span></span><!--[endif]--><a href="http://ww2.kqed.org/news/2015/03/12/dr-paul-kalanithi-stanford-writer-and-neurosurgeon-dies-at-37"><span style="color: #0563c1; font-family: Calibri;">http://ww2.kqed.org/news/2015/03/12/dr-paul-kalanithi-stanford-writer-and-neurosurgeon-dies-at-37</span></a><o:p></o:p></div>
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</span></span></span><!--[endif]--><a href="http://mobile.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html?referrer&_r=1"><span style="color: #0563c1; font-family: Calibri;">http://mobile.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html?referrer&_r=1</span></a><span style="font-family: Calibri;">
<o:p></o:p></span></div>
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</span></span></span><!--[endif]--><a href="http://mobile.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?_r=1&referrer"><span style="color: #0563c1; font-family: Calibri;">http://mobile.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?_r=1&referrer</span></a><span style="font-family: Calibri;">
<o:p></o:p></span></div>
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</span></span></span><!--[endif]--><a href="http://www.washingtonpost.com/news/inspired-life/wp/2015/03/12/before-i-go-a-stanford-neurosurgeons-parting-wisdom-about-life-and-time/?postshare=221426186308306"><span style="color: #0563c1; font-family: Calibri;">http://www.washingtonpost.com/news/inspired-life/wp/2015/03/12/before-i-go-a-stanford-neurosurgeons-parting-wisdom-about-life-and-time/?postshare=221426186308306</span></a><span style="font-family: Calibri;">
<o:p></o:p></span></div>
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<span style="font-family: Calibri;">I really have nothing to add to what these writers have
shared. <span style="mso-spacerun: yes;"> </span>They each capture a sliver of
this experience perfectly for me.<span style="mso-spacerun: yes;"> </span>They
hit a note that resonates, even generates some sort of harmonic internal peace
for me.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">But there’s an article I do want to talk about.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">It’s an article about a young Christian woman with Stage IV
cancer, Kara Tippetts, who was documenting her end-of-life process as a spiritual
Christian journey and, in parts, as a statement in opposition to the death with
dignity laws supporting terminally ill people’s choices in Oregon and
Washington.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Kara’s open letter to Brittany Maynard (<a href="http://www.today.com/health/brittany-maynards-husband-talks-about-letting-her-go-1D80424130">http://www.today.com/health/brittany-maynards-husband-talks-about-letting-her-go-1D80424130</a> ) the very young
cancer victim who moved to Oregon in order to benefit from its death with
dignity laws, is the typical I’m-so-loving-and-empathic-and-understand-you-but-know-better
Christian syrup that I get from “good” Christian neighbors who “love everyone,
including the GLBTQ community” but state “marriage is between a man and a woman”
or worse, claim to be “non-political.”<span style="mso-spacerun: yes;">
</span>What they would probably call a practice in love is really a practice in
rhetorical appeals.<span style="mso-spacerun: yes;"> </span>It’s about appearing
to connect at the heart in order to convince the reader that his or her own experience
and wisdom is just not quite as elevated as the writer’s own.<span style="mso-spacerun: yes;"> </span>At its best, it’s annoying but benign arrogance
that sometimes leaves droplets of insight.<span style="mso-spacerun: yes;">
</span>At its worst, it’s bigotry clothed in sheepskin, self-affirming tunnel
vision.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Kara’s life and death is inspiring.<span style="mso-spacerun: yes;"> </span>Her letter, eh – benign and annoying. <a href="http://www.aholyexperience.com/2014/10/dear-brittany-why-we-dont-have-to-be-so-afraid-of-dying-suffering-that-we-choose-suicide/"><span style="color: #0563c1; font-family: Calibri;">http://www.aholyexperience.com/2014/10/dear-brittany-why-we-dont-have-to-be-so-afraid-of-dying-suffering-that-we-choose-suicide/</span></a><span style="font-family: Calibri;"> <o:p></o:p></span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">But Ann Voscamp in her blog <i style="mso-bidi-font-style: normal;">A
Holy Experience</i> writes really well about Kara’s death,
vulnerability, intimacy, and connection in “How to Recover the Lost Art of
Dying Well”<span style="mso-spacerun: yes;"> </span>at </span><a href="http://www.aholyexperience.com/2015/03/how-to-recover-the-lost-art-of-dying-well-what-kara-tippetts-taught-us/"><span style="color: #0563c1; font-family: Calibri;">http://www.aholyexperience.com/2015/03/how-to-recover-the-lost-art-of-dying-well-what-kara-tippetts-taught-us/</span></a><span style="font-family: Calibri;">”<o:p></o:p></span></div>
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<span style="font-family: Calibri;">There are some wolves teeth in that lambskin.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">There is a lot of what Ann writes that resonates with me and
the reflective work I have been doing to nurture my own living relationships
and prepare for my own death.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Just take out the “I know God’s will” stuff:<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "proxima_nova_rgregular",serif; font-size: 12pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"> S</span><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">he’d said it brave into the camera, the liquid <span style="mso-spacerun: yes;"> </span>of her heart brimming like light in her eyes:<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">“<a href="https://www.youtube.com/watch?v=g02BVmlam6k" target="_blank"><b><span style="color: #54aab6; text-decoration: none; text-underline: none;">I feel like I’m
a kid at a party, whose Father said it’s time to leave and go Home already</span></b></a>…..<o:p></o:p></span></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">And I am not afraid of dying — I just don’t want to go</span></b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">.”<o:p></o:p></span></div>
<br />
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Her
wondrous little boy, Lake, had curled into her in bed and he had looked into
her eyes and whispered: “<a href="http://www.mundanefaithfulness.com/home/2015/3/6/kara-tippetts-documentary" target="_blank"><b><i><span style="color: #54aab6; text-decoration: none; text-underline: none;">I don’t want you to go</span></i></b></a>…”<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Kara
hadn’t wavered, <a href="http://www.mundanefaithfulness.com/home/2015/3/22/homecoming" target="_blank"><span style="color: #54aab6; text-decoration: none; text-underline: none;">she was 38 years old and the mother of 4 children, dying of cancer, and
she hadn’t looked away </span></a>— She nodded and stroked his cheek with the
palm of her hand, like she could etch her love right into his grief.<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">I
had choked it out last night before I turned the last light out:<o:p></o:p></span></div>
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<i><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">“I feel like I am a kid still left at the party — and I’m at the
window watching her go… watching the life of the party go.”</span></i><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">The
strange hush about things now, in the wake of her really going, feels like a
lingering holy.<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">“<i>Death
is the mother of beauty</i>,” Wallace Stevens wrote.<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">I
don’t think I agree with him, but I wonder if death gives a frame to our life
on this side of forever? I wonder if death is this gold frame, the gilded
boundary around every life that makes it it’s own work of art. Without death,
would our lives lose its very shape?<o:p></o:p></span></div>
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<i><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">The frame around life, the death boundary around life, makes us
appreciate every life as art.</span></i><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">We
are in awe of breathing, of the gift of being, because it’s fleeting.<o:p></o:p></span></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">We love life more, the more we realize all this lovely life is
transient.</span></b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><a href="http://www.aholyexperience.com/?p=139816" target="_blank"><span style="color: #54aab6; text-decoration: none; text-underline: none;">Before I flew to Iraq a few weeks ago</span></a></span></b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">, I sat with Kara’s words, read them over and over again until I
memorized them and they began to form me, words Kara told her Jason when they
sat at the edge of the ocean together one last time:<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">“<b>I
tell him it won’t be any time before we are reunited</b> —<a href="http://www.mundanefaithfulness.com/home/2015/2/17/abiding" target="_blank"><b><span style="color: #54aab6; text-decoration: none; text-underline: none;"> but for the
mortal it feels impossible to understand the close distance of eternity</span></b></a>.”<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">I
tell Kara I will sit with this, fly with this.<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">And
Kara tells me: “I will be praying for your travels — There is so much that
makes us finite, <i>but the gift of wonder we have been given over the infinite
is amazing</i>.”<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Kara
wrote me and told me — <b>We must always have an imagination for the grace that
will meet us.</b><o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">She
told me: <i>Safe travels, friend.</i><o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Kara
taught us all that: How to have an imagination for the grace that will meet us,
how to unwrap the gift of wonder over the infinite, all this that has no finite
end — <i>how to travel well, right through to the end…to the end that ushers us
into the beginning forever.</i><o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><a href="http://www.amazon.com/gp/product/0781412153/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=0781412153&linkCode=as2&tag=holyexper-20&linkId=5S5QPEGJIB42KBH4" target="_blank"><span style="color: #54aab6; text-decoration: none; text-underline: none;">Kara had said that:</span></a> “<b>When you come to the end of yourself,
that’s when something else can begin</b>.”<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">What
does it matter if we know how to live well — <i>but not know how to die well?
Especially when dying is our last act of living here?</i><o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Our
kids ask each other that sometimes, ask us that: “<b><i>How do you want to die?</i></b>”<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">(Nobody
gets to avoid that question– we are all 100% destined to die.) It’s a question
we should ask from our pulpits, across our tables, on our pillows staring up in
the dark, feeling the length of the night’s quiet.<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">One
of our boys always answers the same: “I want to die quick, die painlessly, die
in my sleep.” My father tells me often, he wants to die without being a burden.<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">It’s
painfully poignant: <b>We want to die any way that we keeps us from knowing
that we’re actually dying.</b><o:p></o:p></span></div>
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<i><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">None of us get out of life alive.</span></i><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
<br />
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">And
in everything in life — <i>we have to learn.</i> <a href="http://www.mundanefaithfulness.com/home/2015/2/12/present-grace" target="_blank"><b><span style="color: #54aab6; text-decoration: none; text-underline: none;">People who live well, teach us the art of living well</span></b></a>. And
people who die well, teach us the art of dying well.<o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">We
needed someone to show us how and Kara taught us how to die.<o:p></o:p></span></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Kara recovered for us the lost art of dying well.</span></b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><a href="http://www.mundanefaithfulness.com/home/2015/2/10/if-i-tried" target="_blank"><i><span style="color: #54aab6; text-decoration: none; text-underline: none;">Because she’d recovered the art of living well</span></i><span style="color: #54aab6; text-decoration: none; text-underline: none;"> </span></a>—<b><o:p></o:p></b></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Kara
taught us that:<o:p></o:p></span></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">In our efforts to terminate suffering — too often we can be
forced to<i> terminate the sufferer</i> — when we were meant to <i>liberate</i>
the aloneness of the sufferer, by choosing to <i>participate</i> in the
sufferings</span></b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"> — choosing to stand with the
suffering, stay with the suffering, l<i>et the suffering be shaped into meaning
that <u>transcends</u> the suffering. </i><o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">The
staggering truth is: <b>Suffering is never a meaningless waste of your life, <i>but
a meaningful way <u>through</u> your life</i></b>.<o:p></o:p></span></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Sometimes the most painful chapters of our lives —- <i>are the
most meaningful chapters of our lives.</i></span></b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Suffering doesn’t have to <i>destroy</i> our ultimate life
purpose, but can<i> ultimately achieve our purpose in life.</i></span></b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">The word “suffer,” it comes from the Latin that literally means
to ‘bear under’</span></b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"> — suffering is an act of surrender,
to bear under that which is <i>not</i> under our control — <i>but beyond our
control.</i><o:p></o:p></span></div>
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<b><i><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">That is why suffering is an affront to an autonomous society: <o:p></o:p></span></i></b></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Suffering asks us to ultimately bear under that which is
ultimately <i>not</i> under our control — <i>which proves we are ultimately not
the ones in control.</i><o:p></o:p></span></b></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">And
for many of us, maybe that can be too much to bear? <b>More than we can’t stand
physical suffering — <i>we can’t stand not having unequivocal control.</i></b><o:p></o:p></span></div>
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<span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">And
that’s what suffering does:<o:p></o:p></span></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Suffering quietly begs us to <i>surrender</i> — so we can win a
greater wisdom, a deeper strength, a closer intimacy.</span></b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">Suffering says we cannot bear under this cross alone — <i>we can
only bear it, if we can bear depending on others...</i></span></b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
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<b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;">If suffering is about bearing under — suffering is a call for us
all to be a community to stand together and carry the weight of bearing under —
only to find that we are all being carried by a Greater Love.</span></b><span style="color: #444444; font-family: "Batang",serif; font-size: 8pt; mso-bidi-font-family: Arial;"><o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">I took out the text where Ann spoke for God and told the reader,
basically, that God wants us to die his way and not the way allowed by medicine.<span style="mso-spacerun: yes;"> </span>There is a core to this text that speaks
deeply to me.<span style="mso-spacerun: yes;"> </span>I have been working with
my therapist on exactly these issues – staying present with those I love,
accepting the beauty of what I have and will lose and grieving for that,
letting go of a need to control what cannot be controlled, celebrating life and
how it cycles from order to disorder, refusing to be able to believe that a
spirit of love nurtured by a life well lived does not move on somehow.<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">There is an opportunity for connection in the extreme
vulnerability that will come with my death.<span style="mso-spacerun: yes;">
</span>And reading this article helped me think through the spaces and places I
can help co-create for this process.<span style="mso-spacerun: yes;"> </span>I
design a bedroom with a couch and bathroom – a space for sharing time and
company, in times of silence as well as laughter.<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">I have lead a reflective life. <span style="mso-spacerun: yes;"> </span>I think have learned to live “life with dignity" in many ways.<span style="mso-spacerun: yes;"> </span>I can share
deeply and intimately with my closest.<span style="mso-spacerun: yes;"> </span>I
know how to die with grace.<span style="mso-spacerun: yes;"> </span>(I’ve walked
with at least five other graceful die-ers in the last ten years.) <span style="mso-spacerun: yes;"> </span>We could create a really good Lifetime movie
out of all of this.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">What Ann’s blog post has helped me realize is that there is
a danger to dying with grace.<span style="mso-spacerun: yes;"> </span>It can get…well,
churchy.<span style="mso-spacerun: yes;"> </span>A religious performance on this
edge of sincerity, heart and hunger for public approval illustrating one’s
exceptional worthiness....<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I can pose for the photos, post uplifting
insights to my Facebook account and my blog.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">Ann writes that people, not medicine, is what makes this “dying
with grace” possible.<span style="mso-spacerun: yes;"> </span>She’s talking
about living with God’s choice about our death versus our Oregon and Washington
access to our own, medically facilitated choice.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">But here’s the thing.<span style="mso-spacerun: yes;">
</span>All of these people I’ve linked to who have posted about their growth
and insight in these journey’s towards death are only able to do this work of
writing and sharing because of MEDICINE.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">Especially in well researched fields like many cancers
(including breast cancer), we survivors now have a diagnosis of death – and at
the same time, this incredible gift of life.<span style="mso-spacerun: yes;">
</span>We swim, we run, we play with our children, we vacation.<span style="mso-spacerun: yes;"> </span>We reflect, we connect, we grow…because we
are given by science this space of health and wellbeing in our sickness.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">These people’s insight I link to above wouldn’t be sharing
books and websites and blogs were it not for medicine.<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">It’s not only science that contributes.<span style="mso-spacerun: yes;"> </span>All of the academic fields of inquiry add to
the insight we bring to creating this path of grace towards death.<span style="mso-spacerun: yes;"> </span>Humanities (including religion), Social
Science and Science all lead us to insights and practices that support a
patient’s mental, emotional, spiritual and physical journey.<span style="mso-spacerun: yes;"> </span>We have experts in care for the entire person
– and more and more so, the entire network of support that person brings with
them.<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">At the Swedish Cancer Institute, I watch each nurse come out
to greet his or her patient in the waiting room as if that person were the only
person that nurse treats or thinks about.<span style="mso-spacerun: yes;">
</span>I am followed out the waiting room by a social worker who remembers my
children and asks how they are doing with my new bald head.<span style="mso-spacerun: yes;"> </span>I have a family there of caregivers, who show excitement at seeing me and hearing about my life – and graciously share the
joy they are taking in their own lives. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">This is not random.<span style="mso-spacerun: yes;">
</span>It’s intentional, reasoned practice based on research and reflection at
the individual, institutional and academic levels.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Ann is right.<span style="mso-spacerun: yes;"> </span>It’s
about a call to community and a standing together.<span style="mso-spacerun: yes;"> </span>But for me this is also about gratitude for
the work others have put into creating this space of peace and this option for
connection and reflection.<span style="mso-spacerun: yes;"> </span>It’s about
the medical practitioners.<span style="mso-spacerun: yes;"> </span>The drug
researchers.<span style="mso-spacerun: yes;"> </span>The therapists.<span style="mso-spacerun: yes;"> </span>The social workers.<span style="mso-spacerun: yes;"> </span>The bloggers and book writers.<span style="mso-spacerun: yes;"> </span>The politicians and healthcare
reformers.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I’m not saying there is no God or that God is not present in
all of this.<span style="mso-spacerun: yes;"> </span>I am saying simply that the
wolf in the sheepskin here is the assumption that an individual can die well…that
life with dignity is what makes death with dignity possible.<span style="mso-spacerun: yes;"> </span>This smacks of the puritanical assumption
that is carried along by people who claim they are “blessed” with a good life
-- chosen by God…As if there are those who are not blessed, not chosen by
God.<span style="mso-spacerun: yes;"> </span>If you don’t die “with dignity”…was
it because you were not dignified in life?<span style="mso-spacerun: yes;">
</span>Like we all need another thing to fail at!?<span style="mso-spacerun: yes;"> </span>Now we can fail at death?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">It’s problematic for me.<span style="mso-spacerun: yes;">
</span>I have this opportunity for a good death.<span style="mso-spacerun: yes;"> </span>Kara Tippets and all of the other writers I’ve
linked to in this post seem to be walking a good death, sharing a loving insight
to the beauty allowed to us in this walk.<span style="mso-spacerun: yes;">
</span>I’m not going to deny it.<span style="mso-spacerun: yes;"> </span>And my White
Western Lutheran cultural upbringing really loves to believe that my walk of
death is something special, created by me and my choices and my work at
self-actualization…just as Ann and Kara would credit their growth in God as a personal
achievement.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">These stories shared here are not the whole picture.<span style="mso-spacerun: yes;"> </span>My story here is not yet the whole picture.<span style="mso-spacerun: yes;"> </span>Death is traumatic and dirty and tiring and
painful.<span style="mso-spacerun: yes;"> </span>It’s my father in 2009, joints
frozen solid, with bed sores seeping down towards his bones, gasping for breath
for weeks and weeks as my mother cares for him. <span style="mso-spacerun: yes;"> </span>That intimacy and connection provided by death
is also the burden of deciding, minute by minute, whether cajoling another sip
of water out of him extends his life or his suffering, whether a bit more
morphine is killing him or supporting him – and whether we are doing so out of
compassion or selfishness.<span style="mso-spacerun: yes;"> </span>It’s
sitting on his bed, next to his dying body, in companionship and love for hours
at a time … then sipping so much cheap red wine that I vomit all over the sheets
and have to move him, putting him in horrible pain, in order to change
them.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>My mother’s body, in the meantime, wracked
with the stress of his care for two years now, has succumbed to a life-threatening
throat infection that landed her in the ICU.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">It’s hot and tortured.<span style="mso-spacerun: yes;">
</span>It’s my mother in 2014 gasping for oxygen, clawing at her own skin,
refusing food and drink, but sipping eagerly at the morphine.<span style="mso-spacerun: yes;"> </span>It’s her mouth opening and closing,
struggling to draw in air for a breath?<span style="mso-spacerun: yes;"> </span>A
word?<span style="mso-spacerun: yes;"> </span>A sigh?<span style="mso-spacerun: yes;"> </span>But ending with pursed lips and a look of
frustrated consternation.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Both of my parents died with grace – in particularly my
mother.<span style="mso-spacerun: yes;"> </span>They used the knowledge of their
own terminal illness to makes spaces and places for connection and
gratitude.<span style="mso-spacerun: yes;"> </span>They lived mindfully and
intentionally in what wellness they could find and nurtured the presence and
connection they could cultivate.<span style="mso-spacerun: yes;"> </span>They were
able to do this because of science and medicine.<span style="mso-spacerun: yes;"> </span>It allowed them the space and time for
sharing spirit and heart…for growing.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">But the final process of death itself is generally not
graceful.<span style="mso-spacerun: yes;"> </span>It’s full of vomit, blood, fever,
oxygen deprivation, diarrhea, and pain.<span style="mso-spacerun: yes;">
</span>It’s a water torturous process of life-and-death micro-decisions, an
unending emotional exhaustion for caregivers.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Grace is not about God’s choice of when to take you.<span style="mso-spacerun: yes;"> </span>It’s about science provided options for how
to keep you and your caregivers as present and comfortable as possible. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I have been reflecting and working mindfully towards a loving life for decades. And I've had the privilege of access to incredible networks and communities to do so. But dying gives me this platform and an audience... an honorary degree in wisdom attracting well-wishers and patient readers. But dying, after all, is easy.<span style="mso-spacerun: yes;">
</span>Letting go and “finding grace” when there is no other choice left but to
do so is<span style="mso-spacerun: yes;"> </span>not really such an astounding
achievement.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Living with someone you love at this sometimes torturously
long death point…and knowing that you must live on, you must find a new normal,
a new future, even as everything breaks around you, this is the real challenge.<span style="mso-spacerun: yes;"> </span>Pretending it is graceful is a dangerous and
damaging lie.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Take inspiration from all of these stories of terminally ill
people finding growth and light and connection in their walk towards
death.<span style="mso-spacerun: yes;"> </span>But remember that it’s easier for
we-who-know-we-soon-die to let go and be present because we have no responsibility
to the future.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Don’t pretend any of us can teach anything about dying with
grace.<span style="mso-spacerun: yes;"> </span>We can only teach each other how
to live.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">And I, for one, am </span><span style="font-family: Calibri;"> grateful to be in a state with incredibly
advanced healthcare, including death with dignity laws…so that I can live as
well as possible with my community for as long as possible.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
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<o:p><span style="font-family: Calibri;"> </span></o:p></div>
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<o:p><span style="font-family: Calibri;"> </span></o:p></div>
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<o:p><span style="font-family: Calibri;"> </span></o:p></div>
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<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;"><o:p></o:p></span> </div>
</div>
Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com4tag:blogger.com,1999:blog-4346930149063437375.post-58088144468901723032015-03-29T15:26:00.000-07:002015-03-31T15:31:14.882-07:00Updates and Stats<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLNIbUCdezIMiibwUJEeExlKoT8POWRnyFAHVfIMFXKajbZGqTDBMM9fqbNlJedboNugbkte2v9OQM0zKCBrlTE17ahtuW0RfXNFExFXGcoXWOVcAO1Rty5R7egnOGB49KdyY4jW1E6pTD/s1600/TumorMarkers3122015.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLNIbUCdezIMiibwUJEeExlKoT8POWRnyFAHVfIMFXKajbZGqTDBMM9fqbNlJedboNugbkte2v9OQM0zKCBrlTE17ahtuW0RfXNFExFXGcoXWOVcAO1Rty5R7egnOGB49KdyY4jW1E6pTD/s1600/TumorMarkers3122015.jpg" height="241" width="400" /></a></div>
<br />
The good news is that with a weekly chemo treatment that consists of Taxol and steroids, my life is GRAND! I spend my days after chemo treatments travelling to visit old friends in Oregon, chatting and sipping cider until 1 in the morning, spending accelerated death benefits on impulsively FUN technology, hosting family, friends, and children for egg hunts, trampoline sword fights, corned beef and wine...and swimming and walking and laughing and working and loving.<br />
<br />
My liver enzymes keep going down, so it appears the treatment is working there. My strength and stamina keep going up, so that's a good sign, too. The steroids were a bit, uh, energizing! So my oncologist took reduced the dosage. I wasn't surprised to feel some bone "twinges" come back after that. I could feel the steroids kick out my bone pain that very first chemo session. I left feeling SO much better than I entered.<br />
<br />
The climb of the tumor markers has slowed, but not stopped. It's too early to tell if this is because of a lag time and we've yet to see evidence of the results or whether the reaction to this treatment, like all of the treatments we've tried, is mixed. We'll be doing another PET scan around April 23rd.<br />
<br />Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-26485931061792314682015-03-10T21:14:00.000-07:002015-03-10T21:14:10.168-07:00SSS-TTTT-EEE-RRR-OOO-III-DDD-SSS!!!!!!!!!!!<br />
I have a new theory. Everyone talks about how awful it is when your hair falls out. Women survivors, medical professionals, caregivers... They'll all tell you stories about the emotional turmoil.<br />
<br />
Yes. It's big. It's emotional. <br />
<br />
But what if it's the steriods?<br />
<br />
I mean, think about it. Most breast cancer survivors start chemo for the first time with a cocktail that causes hair loss. And that same cocktail is delivered with a nice strong dose of steriods to prevent an allergic reaction.<br />
<br />
The first time I did steriods was with the TAC I did in 2008. There were plenty of side effects. Nausea, low blood counts, menopause -- and then the constipating side effects of the drugs for the side effects. I think all of that other stuff going on kept me from noticing the full effects of the steriod. I had a bit of a rush and a drop with each chemo treatment, it's nothing like the ride I'm on now.<br />
<br />
Chemo so far is a breeze. I have no nausea. No digestive issues. No need for side effect drugs. The first time, with Paul on vacation, I had a bit of numbness and some joint pain in my hands and feet that kept me on ibuprofen for a few days and for one single night, one single vicodin. (The vicodin actually worked for this kind of pain.)<br />
<br />
But the chemo itself and the steriod that accompagnies it left me feeling better when I walked out of treatment than I felt when I had walked in.<br />
<br />
And life with a ten-year old in sunny February Californina is just grand. We snacked. We napped. We played. We relaxed.<br />
<br />
Coming back to work, February in Seattle, baldness and fatigue was a bit of a come down. So I am not going to say I approached the second chemo with much enthusiasm.<br />
<br />
But Friday's chemo was also really good. No pain. No nausea. Just one dose of ibuprofen on one day for a slight headache. <br />
<br />
But the steriods?!! Holy MOLY.<br />
<br />
Steriods can be a complete mind-body connected fucked up experience for me. Energy and emotions are a single entity, swinging so high up, so fast -- and then right back down, with even greater velocity.<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/-v9IByzFyXQ" width="420"></iframe><br />
<br />
I was up at 4am on Saturday morning, energetic and relaxed, yet stupid as a goldfish. What a waste! But kinda fun, I gotta admit.<br />
<br />
But by Saturday afternoon, I had Francois on a march of truth, where I listed every emotional stamp I'd been keeping about our relationship, his actions, his behavior, my needs... Francois kept moaning "This is not fun. I am not having fun."<br />
<br />
I told the kids to avoid me if they didn't want to get constantly nagged about chores or personal habits.<br />
<br />
Sunday my daughter's rejection of me and my birthday cake sent me into a long sobbing fit. I spent most of the afternoon sprawled motionless on the coach, watching my son devour one Harry Potter film after the next.<br />
<br />
It was a funeral type fatigue. You know, the complete and utter exhaustion you have after a very emotional event.<br />
<br />
I'm still very emotional. And it's an emotionality that is tied with fatigue. It's very physiological and intertwined. But I've learned some things.<br />
<br />
Exercise. Swim! Get the body's energy moving in the right direction again.<br />
NAP.<br />
<br />
And...hide. I do not have a very practiced emotional filter. If I get this emotional, there might be some boundary issues and transgressions.<br />
<br />
It's a good thing I'm good at apologies.<br />
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<br />Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-728456793011994562015-03-03T17:24:00.000-08:002015-03-10T17:30:08.025-07:00Bellevue Bobness and Baldness<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixyAzySwoBTbZhof-MVx2S54jnvZmlV-f4d3EwGt0XfHJ58cY14Y0Fv8BosAyTlT1SUAbImlhw1o2JwMNEGXtQACR805nfV2M5YjgHHc9So4zmh3RBcklVAarUl-GAfnoZzPkpEaRmbGnQ/s1600/baldweekend1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixyAzySwoBTbZhof-MVx2S54jnvZmlV-f4d3EwGt0XfHJ58cY14Y0Fv8BosAyTlT1SUAbImlhw1o2JwMNEGXtQACR805nfV2M5YjgHHc9So4zmh3RBcklVAarUl-GAfnoZzPkpEaRmbGnQ/s1600/baldweekend1.jpg" height="320" width="234" /></a></div>
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<div>
Top Ten Benefits of Baldness</div>
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<div>
<ol>
<li>You don't need a swim cap.</li>
<li>No embarrassing swimsuit line shaving issues.</li>
<li>People give you spontaneous, heartfelt gifts. All the time. Everywhere.</li>
<li>You don't feel guilty spending $200 on makeup and earrings.</li>
<li>Just tape down your nose and voila! You've got a Voldemort costume for Halloween! </li>
<li>If there's long hair clogging the bathroom sink, you can yell at your daughter about picking up after herself with complete confidence.</li>
<li>When your bones hurt and you need help with your grocery bags, you don't need to worry about the clerk resenting your entitlement issues.</li>
<li>Showers can get done really really quickly.</li>
<li>Water, air and hands touching your head becomes new, novel and delicious.</li>
<li>You lose the Bellevue Bob privilege.</li>
</ol>
<div>
The first time I tried to write this list, I had a hard time finishing. I'm realizing that while I love novelty and new beginnings, even in Cancer treatment processes, transitioning is difficult.<br />
<br />
The entire family has been a bit shell shocked by the move to chemo. Things become more <i>real</i> once that word becomes active. And when we learned, after a good wrestling match with the insurance company, that I'd be starting with the chemo that causes hair loss, that weighed on us. It's been pretty heavy here in the Lepeintre household over this last week.<br />
<br />
I've been binge watching medical shows like House. (I have no excuse! I have no explanation! But I can tell you they do not have insurance issues there. I also feel a sense of moral superiority when they have a patient with a 5 cm liver tumor doomed to die. HA! That is NOTHING, baby! :-))<br />
<br />
In general, I've been emotionally and physically constipated.<br />
<br />
So when I went in Tuesday for chemo, and we had to reschedule again, I was feeling really quite down for me. <br />
<br />
So I went SHOPPING. Hair, make up, boots! </div>
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Since I only have a little over two weeks of hair left, I decided to leave the Bellevue Bob and just trim it up. I wanted to keep my son reassured during our upcoming trip to Disneyland. I explained what I wanted to my stylist. She responded "oh, like a pixie, but longer in front, right?" Having no idea what a pixie is but using old just-fake-it-and-get-by habits, I responded "Yes."<br />
<br />
When she chopped off that first long piece up front, there was no turning back. And I was ready to cry. A bad day had just become worse.<br />
<br />
I talked to myself through each snip, reminded myself that a change would be fun. I visualized makeup and earrings and new leather jackets.<br />
<br />
But in the end, I loved it. I immediately loved it!<br />
<br />
And I felt free. Free. <br />
<br />
Me.<br />
<br />
I'm not a Bellevue Bob girl, even though I've worn a bob for most of my 14 mothering years. I'm not even blond. Never was.<br />
<br />
And despite having some great, ample ta-ta's most of my life, I've never been a curvy girl, Not really. Not inside. <br />
<br />
There was a moment, last Spring, after I'd gained about 40 extra pounds, where I decided I either needed to go get me a new set of boobs or lose the stomach. The middle-aged man beer belly look just wasn't working for me. <br />
<br />
So I lost 40 pounds. <br />
<br />
I'm strong and quirky and smart. I'm positive and insightful and appreciative of the gifts people bring. I'm impulsive and distractable, manic, bossy, impatient, assertive and thrilled by novelty -- new people, new experiences, new insights to how to be here in this life. I'm funny and I laugh with good heart and goodwill towards myself and others. I'm a bit self-centered, but I'm still a good friend.<br />
<br />
I'm not nurturing or organized or thoughtful. I miss appointments. I forget birthdays, thank you notes, and Christmas cards and names. I'm not tidy or consistent with house rules and chores. But my children are amazingly well-adjusted. I am culturally Christian, but not a believer in any specific religion.<br />
<br />
But I get the model mom perks with this bob, micro-nods of approval in so many tiny ways and small spaces that it's beyond my ability to illustrate it here.<br />
<br />
I like those perks. And I really had some angst around shedding them.<br />
<br />
In my English 101 class, we are reading the short story "My American Jon" by Chimamanda Adichie (<a href="http://thebinj.blogspot.com/2007/08/chimamanda-ngozi-adichie.html">http://thebinj.blogspot.com/2007/08/chimamanda-ngozi-adichie.html</a>). I have been pondering the sheer strength of her protagonist, Amaka. She is a Nigerian woman, an immigrant to the US, who has been in a relationship with a White man "Jon" for two years. In the story, we see overwhelming evidence of how small slights that measure her as less than or Other compared to White barrage her everywhere, all the time. One of the many things this story describes is an addiction Amaka has to the privilege, the perks, this man gives her access to, even when these perks create racial microaggressions against her. <br />
<br />
In a crazy upside down way, one cancer perk is it's ability to free me from the addiction I have to other emptier perks.<br />
<br />
Now if I could just get this bald head a bit smoother looking quicker!!! And...of course...some earrings...<br />
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Last week, when I asked if maybe I was passing, I was on to something.<br />
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Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-22876566783341338202015-02-24T20:28:00.000-08:002015-03-10T20:38:18.152-07:00Disney Therapy!!<br />
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The day after my first chemo, I flew with my 10-year old son to Disneyland, Legoland and Seaworld. </div>
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Here is what I did the day after chemo:</div>
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<a href="https://www.facebook.com/video.php?v=10206099043254530&l=8085014166936398467">https://www.facebook.com/video.php?v=10206099043254530&l=8085014166936398467</a></div>
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Here is what I did on the other days.</div>
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We played, took naps, hung out and had a very good time. Things didn't get emotional for me until Seaworld, when we did the dolphin interaction. It was just so real and big -- the fact that this one thing, I would never, ever do, if I did not know I was going to die. Forking the $90 over for the disc filled with pictures just felt so ....inadequate. The finality of the once-in-a-lifetime experience, so deeply sad.</div>
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And the memory so beautiful.</div>
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<br />Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-88445337071728763242015-02-11T17:36:00.000-08:002015-03-10T17:37:04.489-07:00Sigh.<div class="separator" style="clear: both; text-align: center;">
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<br />
My insurance denied the chemo that allow me to keep my hair. The wrestling with the insurance company and the increasing awareness of bony aches and pain and liver tenderness has been taking up the little emotional bandwith I carry with me. It's interesting how I can feel happy and fine and strong -- and not realize anything is really happening to me emotionally until a small crisis, that usually wouldn't overwhelm me, feels a bit mountainous.<br />
<br />
So I got an expensive haircut and bought a new pair of boots. I invested in some high quality makeup and indulged in a facial.<br />
<br />
Cutting my hair feels strong, an act of control over a body that is slipping out of control.<br />
<br />
But I'm not feeling the power. Not today.<br />
<br />
So I decided to work it through here and write up a top ten great things about being bald.<br />
<br />
<ol>
<li>You don't need a swim cap.</li>
<li>No embarrassing swimsuit line shaving issues.</li>
<li>People give you spontaneous, heartfelt gifts. All the time. Everywhere.</li>
<li>You don't feel guilty spending $200 on makeup and earrings.</li>
</ol>
<div>
<br /></div>
<div>
.... I'm having a hard time thinking of any more after 4. </div>
<div>
<br /></div>
<div>
Sigh.</div>
Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-5831189937756610122015-02-07T10:51:00.003-08:002015-03-10T21:19:50.306-07:00The Armies of Wahl and Harrington<br />
<br />
It's Dr. Harrington's Office! It's Dr. Harrington's Office!! She has room for me!<br />
<br />
My breast surgeon has always carried a mythical quality about her. She's mom to her young children and close friends and running buddies with one of my teaching colleagues at school.<br />
<br />
But when I see her for surgery?<br />
<br />
She's Aragon.<br />
<br />
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<br />
She commands power and respect. She leads firmly, but with a clear vision and heart. And she fights and slices with a precision and skill admired by all.<br />
<br />
She defends me against evil invaders.<br />
<br />
And I feel a little star struck when I'm in her presence!! <br />
<br />
In all seriousness, she's THAT good. And her team is that good. And I've had some time to think about what makes her and her team and Dr. Wahl and her team so GOOD.<br />
<br />
They hire competent, smart, empathetic professionals and they keep those people. <br />
<br />
Dr. Wahl and Dr. Harrington inspires a collective vision of something greater than each person's personal interests. People share a LOT with me. And when you're waiting for this procedure or that procedure, you have a like of time to share.<br />
<br />
I have never, ever heard Dr. Wahl or Dr. Harrington's team members express anything but pride in their ability to support patients and be part of a professional, respected team.<br />
<br />
Contrast this with the ER staff at Swedish who bragged about how much money they were making and made teasing, diminutive comments about the surgeon behind his back.<br />
<br />
I have never, ever heart Dr. Wahl or Dr. Harrington's team members make a comment that would demean anyone, for any reason, or create an unwelcome environment.<br />
<br />
Constrast this with the ER staff member at Overlake, who shared her Christianity and her distaste for people with tattoos, feeling my Bellevue blond bob made us ideological sisters. (It made me very careful about what I said. In my vulnerability, I am hesitant to come out as a GLBTQ loving agnostic and I am thinking of how threatening microaggressions become here. I'm also thinking I should shed the Bellevue bob and be a bit more out. Am I passing?)<br />
<br />
The pride each of these doctors' staff members takes in their ability to help patients is uncontainable. Muff, the nurse practitioner, explains how she has rewritten all of the medical release forms to be more patient friendly. Dawn's warm heart and professional expertise weave the practical and the personal in only loving, supportive ways.<br />
<br />
It's a culture they've nurtured. And that kind of culture takes strong leadership and strong community. You can't have a lot of turn over and keep that kind of consistent vision.<br />
<br />
But there's also evidence of a lot of active, ongoing reflection here. I see this in Dr. Wahl's office because I am there more often. <br />
<br />
Dr. Wahl and her team are supporting all of us, at all stages of cancer, in a journey that forces us to grapple with death. Managing expectations while supporting well-being is a tricky balancing act. Your heart can be in the right place and it's still incredibly easy to step right into a patient's sensitive spot. Somewhere, Dr. Wahl and her team are working very hard at thinking through how to frame situations, how to foreshadow what may come without instilling fear, how to read what a patient needs emotionally and how to respond to that.<br />
<br />
Really, someone should do a discourse analysis of this woman's approach. She is a master. A model of discursive insight, heart, reflection and professionalism. <br />
<br />
And she leads her team to be this as well.<br />
<br />
I suppose that makes her Gandalf? Nah. She has too much female power and authority.<br />
<br />
She's the elf queen.<br />
<br />
<br />Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com2tag:blogger.com,1999:blog-4346930149063437375.post-26064566737478169392015-02-07T09:29:00.000-08:002015-02-07T11:04:46.014-08:00Bring on the medical Marijuana OR Vicodin is NOT my friendThis is a boring post, filled with mundane facts about the last week. Some of you like to know that stuff though.<br />
<br />
In many senses, I'm rather happy that chemo has been pushed back this weekend. It helps me keep my symptoms and reactions straight. It's been a busy week.<br />
<br />
Thursday 1/29/2015 -- All protein diet for PET Scan<br />
Friday 1/30/2015 -- PET Scan<br />
Tuesday 2/2/2015 -- Let's start chemo conversation with oncologist.<br />
Wednesday 2/3/2015 Pre-Op appointment for chemo port surgery.<br />
Thursday 2/4/2015 Chemo port surgery<br />
Friday 2/5/2015 Echo cardiogram and...cancelled chemo. Insurance rejection.<br />
<br />
Best thing about this week? I now find it relaxing and enjoyable to hang out at Swedish in Issaquah. I get treated to warm blankets, extremely caring people, upbeat music, and well, just down time. I get time to sit and reflect and be grateful. I really like PET scans and echo cardiograms. Pre-op before surgery at Overlake is also very nice. If there were the sound of running water, you'd swear you were in the Olympic Spa.<br />
<br />
And then there is the experience of your team getting angry for you at your insurance company -- and doing the work to support you and fight for you.<br />
<br />
And my dear colleague Ron Holland caring so well for my students.<br />
<br />
It's like a semi-vacation.<br />
<br />
So my biggest concern this entire weekend? It sounds pretty minor. Constipation and bloating! Stress and high protein diets and lack of exercise create a very uncomfortable Suzy. And from the morning before surgery until the day after, I gained 10 pounds. <br />
<br />
We all get achy with constipation. Add bone mets in your lower back and hips to that achy feeling. It's a flashback to a bad PMS episode. Black coffee, water and stool softeners weren't doing ANYTHING.<br />
<br />
The surgery was AWESOME. I have almost no pain at the surgery site and I had full range of movement immediately. I wouldn't have even touched the Vicodin Dr. Harrington sent home with me if it hadn't been for a flaring bone met pain in my hip -- probably due to the position they had me on the table?<br />
<br />
Unlike the pain of this summer, this pain didn't limit my movement. But on the other hand, there was no position I could find to make it go away. It was the same, blood raw, open wound kind of traumatic pain I had last summer, but in a smaller area. <br />
<br />
So I tried my old standby, ibuprofen. No effect.<br />
<br />
I have never had to use more than ibuprofen to control pain. Wisdom teeth, double-mastectomy, 4th degree tear in childbirth --- None of it produced pain I couldn't control with ibuprofen. So when I decide to take a Vicodin for bone pain, it's a FIRST -- and gives you some perspective on what the bone pain can be like. Thank SCIENTISTS for radiation!!<br />
<br />
I tried a single Vicodin. No effect. The dosage is 1-2 pills every 6 hours.<br />
About a 1/2 hour later, I tried a second Vicodin. It didn't seem to impact the pain in my hip much, but it knocked me out. I slept the rest of the day, waking up when the med wore off and finding the pain the same.<br />
Took a Vicodin before bed. Woke up at 2am in pain. Another Vicodin.<br />
<br />
By morning I felt better. So just took some ibuprofen. Went in for the chemo treatment that didn't happen because my insurance thinks I should just suck up the extra pain and side effects of the cheaper treatment.<br />
<br />
Went home and was experiencing pain pretty much everywhere, but not the severe hip bone met pain. So I thought, heck, why be in pain? I took a single Vicodin.<br />
<br />
By 6pm, when everyone was coming home, I was agitated and anxious -- a caged tiger! I was soooo looking for a reason to get really ANGRY at Francois. I hard time finding a reason. So he shot out of there as quick as possible and ran some errands.<br />
<br />
Then a few hours later, I was calming down, but I started shivering and developing a fever. I checked my surgery site and it looked clean. Not tender nor swollen. So before going to bed, I decide to Google withdrawal effects from Vicodin.<br />
<br />
Yep. I think that after a single 36 hour dance with this damn drug (5 pills, total) I was suffering withdrawal! My aches and pains were probably withdrawal as well! That drug is hell.<br />
<br />
Time to get a hold of some medical marijuana.<br />
<br />
I'm glad this experience happened without chemo. It would have been hard to figure out what was causing which side effect.<br />
<br />
Feeling really good this morning.<br />
<br />
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<br />Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com1tag:blogger.com,1999:blog-4346930149063437375.post-46297627152249988072015-02-04T21:43:00.000-08:002015-02-04T21:43:58.172-08:00Chemo Time!<div>
<br /></div>
It's no surprise. And we've been expecting this move since October. So really, I've gotten three extra chemo free months.<div>
<br /></div>
<div>
But it's still a surprising shock to the system to have what you knew was on the horizon suddenly arrive. It's a milepost on a journey, a marker and a reminder. </div>
<div>
<br /></div>
<div>
Details? The cancer is still the same stubborn smart cancer it's always been. It's just that the slow creeping new tumors and growth is finally at a place where my liver could get really funky really fast. So my oncologist suggested we "beat it down" with some chemo and then, maybe, if things go well, come back to the Affinitor to maintain for awhile.</div>
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You gotta love how she frames things! </div>
<div>
<br /></div>
<div>
Let's beat this down.</div>
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<br /></div>
<div>
Chemo won't cause me to lose my hair and I probably won't have a lot of disturbing side effects. I'll eventually get a weird rash on the palms of my hands and feet, which is usually the side effect that ends up causing people to have to stop this particular treatment for a bit.</div>
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<br /></div>
<div>
It's one hour of infusion every three weeks.</div>
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<br /></div>
<div>
Tomorrow I get my chemo port put in. Friday is my first chemo. </div>
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<div>
I'll write more tomorrow. Had a GREAT day with the folks at Dr. Harrington's office.</div>
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Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-75287358452985106322015-02-04T21:05:00.001-08:002015-02-07T09:30:37.328-08:00My HAPPY as expressed by Mary Szybist's poem "Happy Ideas"<div class="separator" style="clear: both; text-align: center;">
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<o:p><b> This poem expresses how I feel almost all the time. Remember that when you read my explorations of the new, complicated feelings and responses I have to this journey. -- Suzy</b></o:p></div>
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<h2 style="text-align: center;">
Happy Ideas</h2>
<div align="center" class="MsoTitle" style="text-align: center;">
<o:p></o:p></div>
<div align="right" class="MsoNormal" style="text-align: right;">
<i>I had the happy idea to fasten a bicycle wheel<br />
to a kitchen stool and watch it
turn. <br />
</i>-- Duchamp<i><o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I had the happy idea to suspend some blue globes in the air<o:p></o:p></div>
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And watch them pop.<o:p></o:p></div>
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<div class="MsoNormal">
I had the happy idea to put my little copper horse on the
shelf<br />
so we could stare at each other all
evening.<o:p></o:p></div>
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I had the happy idea to create a void in myself.<o:p></o:p></div>
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Then to call it natural.<o:p></o:p></div>
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Then to call it supernatural.<o:p></o:p></div>
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I had the happy idea to wrap a blue scarf around my head and
spin.<o:p></o:p></div>
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I had the happy idea that somewhere a child was being born
who <br />
was nothing like Helen or Jesus except
in the sense of changing everything.<o:p></o:p></div>
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I had the happy idea that someday I would find both pleasure<br />
and punishment, that I would know them
and feel them,<o:p></o:p></div>
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And that, until I did, it would be almost as good to
pretend.<o:p></o:p></div>
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I had the happy idea to call myself happy.<o:p></o:p></div>
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I had the happy idea that the dog digging a hole in the yard
in the<br />
twilight had his nose deep in mold-life.<o:p></o:p></div>
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I had the happy idea that what I do not understand is more
real<br />
that what I do,<o:p></o:p></div>
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And then the happier idea to buckle myself<o:p></o:p></div>
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Into two blue velvet shoes.<o:p></o:p></div>
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I had the happy idea to polish the reflecting glass and say<o:p></o:p></div>
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Hello to my own blue soul.
<i>Hello, blue soul. Hello.<o:p></o:p></i></div>
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<i><br /></i></div>
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It was my happiest idea.<o:p></o:p></div>
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<br /></div>
<br />
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Mary Szybist “Happy Ideas” from <i>Incarnadine </i>2013 Graywolf
Press Minneapolis<o:p></o:p></div>
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Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com1tag:blogger.com,1999:blog-4346930149063437375.post-66746415898013446622015-01-27T12:02:00.000-08:002015-01-28T06:56:52.532-08:00Minivans<div class="separator" style="clear: both;">
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There are the rust colored stains in the back seatbelts from the great 3-year-old-in-a-carseat nosebleed of 2009. (Imagine three-year-old Paul, trapped in a carseat, experiencing his first major nosebleed. Imagine his three-year-old friend Eric, trapped in the seat next to him, eyes wide and silent, splattered with his hysterical, headshaking, screaming friend's blood.)</div>
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There's a urine smell that's awakened when the sun comes out, a relic of a Camp Fire Girls' trip that ran, uh, just a little too long between rest stops.</div>
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There's a bit of Gramma-vomit in the front passenger seat carpet and probably some other residues we'll not discuss from that trip down from Seattle that ended straight into the emergency room at Eugene's Riverbend Hospital.</div>
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More recently there's the smell of dead dog. It was a hearse for our Beagle, the legendary and mightily difficult Moby.</div>
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Pine needles from a camping trip in 2014 collect around lego heads, gum wrappers and a sticky half-eaten cereal bar someone decided she didn't like. I think there's a bit of mildew growing in the very back seat because I didn't open up the stowaway seats again after the last big haul in the summer. </div>
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I threw an old horse blanket over it so the kids' friends wouldn't be completely creeped out.</div>
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There's sticky coffee-milk scum over loose change in the cupholders </div>
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--because mom's no better at keeping this dang van tidy than anyone else.</div>
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And I'm driving the damn van to the garage because it's December 27th and the oil hasn't been changed since June and the front headlight has been out since September. I have to get down to Eugene to work with my sister on my mom's memorial.</div>
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The van is a fucking mess -- even by my standards. And while I've vacuumed it before taking it in, I'm still feeling hot and ashamed -- frustrated and angry.</div>
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This ugly, smelly, beat up van, despite my abuse and neglect, runs great. </div>
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It's going to fucking outlive me.</div>
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And the front desk clerk at the garage has no idea what's coming at him.</div>
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"So what was the mileage when you last changed your oil? Are you SURE?"</div>
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"It's what the sticker said"</div>
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"Let me go out and look at this. The sticker is supposed to mark when you are supposed to GET an oil change, not when the oil change happened," he lectures.</div>
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Like I give a flying crap.</div>
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His office mate gives me a knowing look and tells me this guy can get a bit into the care-for-your-car lecture.</div>
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I can feel one of those cancer-fits coming on, like the outburst at the department retreat and the tantrum camping with my family last August.</div>
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I start rehearsing. There's been a lot going on in the last six months. Nah. I know I can't explain without losing it.</div>
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Clerk-guy comes back, his milky face pinched and earnest, triumphant. Yes, the mileage was when the car was SUPPOSED to be serviced...</div>
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Clerk-guy starts flipping through paperwork.</div>
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"Now let's look, here. See? We can detect some patterns. Let's look at your car service history."</div>
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Steely and still. I am steely and still. I feel my scary rising.</div>
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He taps his pencil on a line entry in some logbook he has.</div>
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"If you think going through a log of my service history with me is going to change my behavior, it's not."</div>
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Scary steel.</div>
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He's appropriately taken aback. Sputters he just wants to suggest....</div>
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"I can't discuss ANY of this right now."</div>
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Tears rise. Voice shakes. Body solid with anger.</div>
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"Ok. Ok. No problem. No problem." Hands thrust forward, his angst clouds his face -- goal clear: Get her out of here....</div>
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And I just can't shake the ANGER I feel at. that. VAN.</div>
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It's everything HARD about motherhood -- errands, kid-shuttling, rat-transport, dog-hearse. </div>
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It's the ammonia smell of sweaty clothes left days in a gym bag and swim suits hanging to dry over the back of the car seat. Because squeezing a rare workout in already seems like a HUGE stretch. Bringing the gym bag in, after grocery bags, forgotten school notebooks, and your work computer for that evening telecommute is just. too. MUCH.</div>
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It's the dirty, smelly, chaotic, overwhelming side of motherhood. Where we overfunction and overextend and snap at the kids and beat ourselves up -- for the mess and the chaos and the dirt and the sticky, drippy residue of the breakfast we gobbled at a stoplight, balanced precariously between the dashboard and steering wheel.</div>
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Because we've not made a plan for how to get kid A to point B and kid C to point D in time to make our 8:30 appointment.</div>
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We beat ourselves up.</div>
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I HATE THIS VAN.</div>
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HOW DARE THIS VAN OUTLIVE ME?</div>
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How dare this van continue its life, hauling back wet, snow sloppy boots, hot chocolate spills ---with socks, gloves, hats and snow pants spread like confetti among a half-dozen giggling boys?</div>
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How dare this van steal the future scars left by adolescence? The bumps, dents and bruises of a newly emerging driver?</div>
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How dare this van, this mover of furniture, carrier of campers -- and witness to load after load after load of childhood artifacts transported to Goodwill --</div>
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How dare this van outlive me?</div>
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I have worked so damn hard at this motherhood thing.</div>
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And I've not always been very good at it.</div>
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And just when I think I'm getting some of it right.</div>
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How dare you steal this from me?</div>
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Fuck you.</div>
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Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com3tag:blogger.com,1999:blog-4346930149063437375.post-43355251826980579172015-01-26T10:05:00.002-08:002015-01-26T10:05:13.284-08:00<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8O0o0cYcEHJyPZuETE2TjBKfeakOofcz29ywblKgCFsj3g6ooYE64gQr9XJcPIQJesBW7zzm-kv5ryj3vSVNgUBIYAXNiwPGrv52YvS4lP8DyKzb_b088rzDRfuRuRM756U92juc6Ncqi/s1600/TumorMarkersJan2015.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8O0o0cYcEHJyPZuETE2TjBKfeakOofcz29ywblKgCFsj3g6ooYE64gQr9XJcPIQJesBW7zzm-kv5ryj3vSVNgUBIYAXNiwPGrv52YvS4lP8DyKzb_b088rzDRfuRuRM756U92juc6Ncqi/s1600/TumorMarkersJan2015.PNG" height="289" width="320" /></a></div>
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The best thing about news that your tumor markers are slightly up? The high five with your spouse in a sun filled kitchen and the "Bora Bora, here we come!"<br />
<br />
Two nights in a row this week I awakened with bone pain in my un-radiated hip and lower back. My lungs are a bit smoky despite increased strength, stamina and energy. (Smoky feeling is that feeling you have in your lungs after hanging out all evening in a bar and breathing in second-hand smoke.) And my liver enzymes are up a bit. <br />
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Now, just to be clear, I have been drinking these last two weeks quite a bit. Memorials and funerals combined with good friends and family made for quite a few indulgent evenings. And there were a couple of added evenings of just straight up self-pity and bitterness. (I have an entire entry to write on that.) It might be my enzymes are up because of these, more traditional abuses. <br />
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But food tastes "normal" again -- and I can eat to my fill without issue. No salty taste. And wine tasted just fine during those two weeks. So I think my body has simply adapted to the Affinitor.<br />
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Ach, so ist es.<br />
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We'll see after the PET scan.<br />
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In the meantime, anyone have any good tips on how to book a good, reasonably priced vacation in Bora Bora? It's time Francois and I celebrated a real honeymoon. <br />
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<br />Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-49668675263921594462015-01-17T19:37:00.000-08:002015-01-17T12:48:36.481-08:002014 has been an AWESOME year.<div class="separator" style="clear: both; text-align: left;">
It's been over two months since I've posted here. I've been on Girls' Weekend in Whistler with my BFF's Serena and Ramona -- and I've gone to Teatro Zinzanni for a surprise birthday party with my dearest friends of my entire life (Francois, Janis, Medora, Serena, Ramona, Michelle). I've spent an amazing weekend at the Oregon coast over Thanksgiving with my family... and watched, in a magical sunlight coastal day, my mother take her last breaths. My dog died, too. And I went to Hawaii with my soulmate (Amazing! <a href="https://lepeintre.shutterfly.com/pictures/8">https://lepeintre.shutterfly.com/pictures/8</a> ) and I designed and executed a memorial for my mother. It's been an awesome end to 2014. I have so deeply enjoyed the love, laughter, friends, family, connection, intimacy, growth and loss -- all shades of beauty to be experienced. </div>
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Teatro Zinzanni!</h2>
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Girls' Weekend!</h2>
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<br />Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-33025021927878763512015-01-15T21:25:00.001-08:002015-01-17T13:38:25.212-08:00Realizations of 10-Year Olds<div class="separator" style="clear: both; text-align: center;">
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Paul's been crying a bit and asking for a cuddle at bedtime every once in a while for a few months now. He has had a few nightmares. When I made the reservations for Hawaii shortly after being diagnosed, he had a dream that he was on a Hawaiian island with his 'tribe', his friends from school. In the dream, a boy he is friends with at school, whose mom has just finished treatment for a very serious breast cancer, was swimming in the ocean and was attacked by a shark. Paul awoke screaming because he knew the shark was going to attack him next.<br />
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Last night, through his bedtime tears, Paul shared that he was afraid I was going to die. I cuddled him and held him close and told him I had those fears sometimes, too. And so did Papa. He sobbed, asking if that meant I WAS going to die. I told him maybe and that we don't know when -but that I do know my oncologist said it would not be this year. I also promised that I would tell him if that changed. <br />
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There was something honest, and clean and open about this. He cried and I held him and the sadness boiled up and out and floated away.<br />
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And today we are happy.<br />
<br />Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-34136377075588300202015-01-15T19:06:00.000-08:002015-01-17T13:34:45.515-08:00Tumor Markers and Pet Scans<div class="separator" style="clear: both; text-align: center;">
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After some fatigue, a bout with pneumonia and some achy bone pain in my back and hips, I was pleasantly surprised by my tumor marker results this December! My PET scan still shows that new tumors keep appearing and some tumors don't stop growing -- but most of them are staying calm or even reducing. It means that while my prognosis is still pretty grim (cancer is supposed to react uniformly to treatment. Having a non-uniform response means my cancer is intelligent like something trained by years of harsh anti-cancer treatments.), I get to stay on a treatment for awhile that has given me the ability to live my life fully.<br />
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I feel amazingly healthy and strong. I am looking forward to taking my son to Disney in February and taking my daughter on a trip soon after. I hope to travel with my soul mate Francois and then go to France this summer with the entire family.<br />
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Much love to all of you.<br />
<br />
SuzySuzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com0tag:blogger.com,1999:blog-4346930149063437375.post-73923089647649141152015-01-15T18:38:00.002-08:002015-01-17T13:35:13.950-08:00Eulogy/Tribute for Mom<div class="separator" style="clear: both;">
<span style="color: #111111; font-family: inherit; line-height: 19.97px;">The mother I remember as a child was fiercely competent and unquestionably wise. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXUaioiU_i_i9N7K8WR07rxnAz5cfdbK8wsU80six5M03rEREQIS5M3ZyQ2ggY9X0YdoUs5B_aVnRBP5n1fdVViqdSvhxZWwUpSc8xIpg6jEwQg_-NSKAgYdoFqnyLaUfQJEeMMbd5Xodr/s1600/Lynn+and+The+Kersten's%2BDog%2BComet.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXUaioiU_i_i9N7K8WR07rxnAz5cfdbK8wsU80six5M03rEREQIS5M3ZyQ2ggY9X0YdoUs5B_aVnRBP5n1fdVViqdSvhxZWwUpSc8xIpg6jEwQg_-NSKAgYdoFqnyLaUfQJEeMMbd5Xodr/s1600/Lynn+and+The+Kersten's%2BDog%2BComet.jpg" height="318" width="320" /></span></a></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Like every mother, she was the final word, the reader of stories, the determiner of bedtimes and meals. She was the source of cuddles and bedtimes stories, the nurse to our booboos, and the secure boundary setter around behaviors, values and traditions. </span><br />
<span style="color: #111111; font-family: inherit; line-height: 19.97px;"><br /></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I was smart enough to know how smart my mother was. She never said anything to me I would disagree with or question. When I would crawl into the room unnoticed to eavesdrop on the adults, it was clear my mother’s words were respected and sought out. </span><br />
<span style="color: #111111; font-family: inherit; line-height: 19.97px;"><br /></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">But although I can never imagine anyone calling mom authoritarian, mom had an absolute authority over all of us, Dad included. </span><br />
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">My parents never fought. </span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;"><br /></span><span style="color: #111111; font-family: inherit; line-height: 19.97px;">For all questions, problems, concerns, needs or desires, she had the best answers. We all knew it and none of us ever doubted it.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">When I saw her outside of this role of supreme being, it was perplexing.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;"></span><br />
<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I remember one time, when I was about 4 or 5, finding her in our hallway, laughing so hard she cried. She was leaning against the wall. When I saw her, I was concerned about her tears. When she saw my concern, her laughter intensified and she could no longer stand. She slid down against the wall to the floor.</span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;"><br /></span><span style="color: #111111; font-family: inherit; line-height: 19.97px;">Having her for a mother was safe, secure, solid, assuring and a bit scary. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">When she needed to punish me, she would ask me to fetch “the paddle” myself. I would have to get a stool, move the stool over to the fridge, step up on the stool, and grab the paddle off of the top of the fridge. Then I would bring the paddle back to her. She would very lightly tap my behind with the paddle and I would always be completely overwhelmed in tears.<u><o:p></o:p></u></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;"><br /></span><span style="color: #111111; font-family: inherit; line-height: 19.97px;">I had total trust in her wisdom and her authority.<br /><br /><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Ep9WGbtjeNOngsdkTdvEC2Fza3AoZ2AjXTt5lOTGL9fZr50Ad5mpWy1NkuXWzgnNedyoD41RLFMyau9odjuKdoECscmJp3KFwtkGWPXCn_gRuVj-uCe1Gzk0mW8uxZTOz1OPCCw14taQ/s1600/christmas+1976+Dec.+the+tree.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Ep9WGbtjeNOngsdkTdvEC2Fza3AoZ2AjXTt5lOTGL9fZr50Ad5mpWy1NkuXWzgnNedyoD41RLFMyau9odjuKdoECscmJp3KFwtkGWPXCn_gRuVj-uCe1Gzk0mW8uxZTOz1OPCCw14taQ/s1600/christmas+1976+Dec.+the+tree.jpg" height="320" width="249" /></span></a></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">We moved to Eugene when I was entering 2<sup>nd</sup> grade. In France, they call the age between 7 and 10 “L’age de Raison” as children move out of concrete magical thinking into a broader sense of themselves and the world.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">My family went through a time machine. We left a house with green carpet and lineoleum, almost manically spotless housecleaning, home cooked dinners, fluffy high hairdos and Mad Men/Leave It To Beaver pictures of marriage. We moved into a house with fluffy textured brown and orange carpeting in the bathrooms and golden yellow and brown patterned carpet in the kitchen. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">(The Second grade classroom had round tables and pillow filled reading corners, not individual desks.)<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Mom went back to school at Lane Community College. She got a job working swing shift at the City of Eugene working for the police department. With her college training, she became a key punch operator and eventually, over time, she worked to become a programmer analyst.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;"><br /></span><span style="color: #111111; font-family: inherit; line-height: 19.97px;">(For those of you younger than 45, a key punch operator is the person who would punch the holes into the cards needed to input data or commands to the computer. This computer would take up entire floors in a building.)</span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I used to think that mom was a victim of my father’s financial unreliability. But my mother corrected me on that point. She WANTED to go back to school she WANTED to work. She LOVED swing shift and oddly placed weekends because of the child- and spouse-free time it gave her.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">She said Dad cried when she told him she wanted to go back to school and find a job. He thought it meant she was going to leave him.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">She just wanted freedom. And so my Dad joined her. He called himself a feminist. Mom taught us to “think like men” (entitled) and Dad taught my sister and I to never limit our possibilities for ourselves. Every time I offered a feminine gendered career goal, Dad would switch it to a male gendered one. Why be a nurse when you can be a doctor? When I said I wanted to be the first woman astronaut on the moon, he said, why be first when you can be best?<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">But one thing my generation learned from her generation is that we can’t have it all, can we? <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">During the first two years of this transition, mom was a tired and frustrated mother. Dad’s attempt to step in as male-feminist only went so far (Hamburger Helper and frozen TV dinners were our staples until the microwave was invented. Then we all moved to TV trays and microwaved hot dogs.)<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">She still loved hanging out with her friends, laughing and music. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I remember one night laying on the floor under the piano with my sister in the living room. We could hear mom in the family room, laughing in response to a show she was watching. She was hysterical and boisterous. Kaylea and I would burst out into gut wrenching laughter every time we heard her laugh.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">But in 3<sup>rd</sup> and 4<sup>th</sup> grade, I developed a fear of the automatic garage door opener because the sound of the opening door meant mom was coming home – and she would be mad.<b><u><o:p></o:p></u></b></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">She would complain. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Making the bed<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Cleaning the kitchen<b><o:p></o:p></b></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Discipline about TV, chores, leaving notes, food, etc<o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #111111; line-height: 19.97px;">T</span><span style="color: #111111; line-height: 19.97px;">he thing that made me so fearful wasn’t mom’s tone of voice or anything she said. She has never said *anything* mean or false or wrong to me as a child. In a way, this is what made her scary.</span></span><br />
<span style="font-family: inherit;"><span style="color: #111111; line-height: 19.97px;"></span></span><br />
<span style="font-family: inherit;"><span style="color: #111111; line-height: 19.97px;">Dad also very rarely said anything mean or unreasonable to me as a child, but he did do so once. So I’ll give you this example of what mom never did, so you can understand what I mean.</span></span><span style="color: #111111; font-family: inherit; line-height: 19.97px;"><br /></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Dad once came home and told me I was going to cause him and mom to get a divorce because I wasn’t doing my chores well. I was only about 10, but I knew that was bullshit. But it was also strangely empowering. It was clear and present evidence of his imperfection as a human and a parent – and evidence of my own competence, my ability to separate for myself what was my responsibility and what was not.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;"><br /></span><span style="color: #111111; font-family: inherit; line-height: 19.97px;"></span><br />
<span style="color: #111111; font-family: inherit; line-height: 19.97px;">When Mom came home tired and frustrated, it made me feel inadequate, because she made good points and I really couldn’t see why I couldn’t’ just do as she needed. <o:p></o:p></span></div>
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<span style="font-family: inherit;"><b><span style="color: #111111; line-height: 19.97px;">Aside</span></b><span style="color: #111111; line-height: 19.97px;">: As a mom, now, I know my mom was probably not feeling angry with *me* when she came home frustrated. I myself have often come home, seen the overwhelmed house, the tight dinner timelines before kid activities start, and started in: "Do the dishes pick up your clothes who left these crumbs all over the...." And that’s on mellow, content days. We saw a family therapist in the summer – part of exploring how to support each other for what we know lies ahead in our future. The therapist asked the kids if I was grouchy when the cancer bothered me. Both kids simultaneously blurted out “Oh YEAH!” What does she do? “She yells at us.” I DO NOT YELL! I SPEAK EMPHATICALLY and it just happens to be my job to tell my kids what to do.<o:p></o:p></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRFAgT-PCcCYk3OROoOOKZ8wHr81QtiG_Y2M7TcU0N2RdD6bWqf1r4wGjB-MqQx0ckg2QKEaE3bRriQTznd8pBwcVprbNc9iCm9MZQWXTSAmqc858STFEmlm8RTTSvxvLFWqQzJpqP4cT-/s1600/ta-for-tots-clean.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRFAgT-PCcCYk3OROoOOKZ8wHr81QtiG_Y2M7TcU0N2RdD6bWqf1r4wGjB-MqQx0ckg2QKEaE3bRriQTznd8pBwcVprbNc9iCm9MZQWXTSAmqc858STFEmlm8RTTSvxvLFWqQzJpqP4cT-/s1600/ta-for-tots-clean.jpg" height="255" width="320" /></span></a></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Kaylea said to me once “Aren’t you glad mom found herself before we grew up?”<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">We become who our parents are, not who they tell us or train us to be. So when mom discovered transactional analysis, she basically gave herself therapy through self-help books. And so she gave us kid books describing to us how to give ourselves therapy.<o:p></o:p></span></div>
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<span style="font-family: inherit;">Our lives were filled with activity and happiness. We r<span style="color: #111111; line-height: 19.97px;">afted down the Willamette after my parents came home from work. We watched them sing Barbershop. We were busy with Eugene Celebrations, family outings, fun dinners or events with my mother's dear friends. These were active happy times. We had a marvelous time as a family.</span></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Analyzing people and relationships became my mother's and my favorite hobby. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Mom couldn’t stop growing. And when growing caused any kind of rupture with her ego and who she thought she was or should be, she would simply shed the part of her ego that wasn’t working for her and make room for the new growth.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">As soon as I reached adulthood, my relationship with my mother changed to one of friendship. I think she changed that relationship when she came to visit me while I was doing my Fulbright in Germany. In the context of a foreign country, she was able to give me all of the control over planning and decisions. She suffered a bit for it. We missed midnight trains, got lost dragging heavy luggage over cobblestones, and slept in some strange places. But it was the beginning of our friendship.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">There’s another gift, a more abstract gift she gave me. <b><u><o:p></o:p></u></b></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">“You grew up without me and I never forgave you for that.” - Mom circa 1990<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I came back from college and living abroad independent. It was the first time my mom had emotional needs around me that were not about the logic of my behavior or her behavior, and just about her emotional wants, needs and desires. It was about her role changing in my life with her having no control over that change.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I have been taught very explicitly by my mother that emotions are a weakness, especially when they are not tied to clear logical values or principle to fight for. </span><span style="color: #111111; font-family: inherit; line-height: 19.97px;">So for the first time, I got to witness my mother, on a few, very limited occasions that I can count on my two hands – say things that were a bit squirrely.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">"I don’t believe in Black Holes," she told me when I came back for my college break, excited about what I had learned in astronomy. I was shocked that the woman who had told me that higher education was a given, not an option, and that I should become an engineer, would reject science. "They taught us a bunch of stuff when I was in school and then they changed their minds," she went on. Honestly? I think this was an emotional response to my need to lecture on every new thing I learn as if it's the first time anyone on the earth has ever heard of it. Even my Campfire girls would call me “Madam Talks-to-Much."</span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Mom had rules about families and the role of the daughter's family with her parents.<br />
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">"The bride's family gains a son. The son's family loses a son."</span></div>
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"The husband adapts to the wife's family."</div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">With all of these rules from the mom about the role of the daughter's family, Francois was pushed a bit to the side in our family. When we were expecting our first child, he tried to exert a bit of autonomy. Mom wanted to come to the ultrasound, but we told my mother that this was something we wanted to share as a couple and that we really didn't want her present.</span><br />
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">So Mom planned a vacation with her best friend, Isabel Wyant. They were going to spend a couple of weeks exploring the national parks in the northwest, in including Glacier and others up near Banf in Canada. They just happened to make the entire national park trip in 4 days instead of 14. </span><br />
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;"> Mom and Isabel showed up on our doorstep in Seattle exactly one hour before our scheduled ultrasound. And we all jumped for joy together at the news that we would be having a little Delphine.</span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I was a bit worried when she told me about her plan for a party for the birth with champagne. I think the only reason that didn’t happen is that she couldn’t imagine getting Isabel to join in.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;"><br /></span><span style="color: #111111; font-family: inherit; line-height: 19.97px;">We got married in France before getting married in the United States. There was a lot of financial advantage for us doing it that way.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Mom was out of her head. The mother of the bride is supposed to plan the wedding. I surveyed my friends and they all agree that you should get married here first. I’m objective and data driven. </span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">There are two levels of squirreliness here – first the logic itself. But second, the belief that the world works on logic.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">In our family, emotions are OK around principles and values – so Mom developed the guilt rules. </span></div>
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<span style="color: #111111;">Mom would say things like "Oh, so is the new rule going to be that I only see you every two months?"</span></div>
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<span style="color: #111111;">Years later, when I started to get a glimmer of what this was about.</span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">“If you simply said you missed me and wanted to see me, it would be easier to call you and visit.” </span><br />
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;"> “I just can’t do that," she said, "I can’t be that vulnerable.”<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I didn’t have the wisdom then to grasp that I could learn to understand her emotional needs and simply support her. I hadn’t had enough practice dealing with imperfect human behavior, so the illusion was still that needs were problems to be solved. Tasks. Weaknesses were things to be fixed. I hadn’t learned yet to see her as a complex, beautiful flawed human whom I could simply be caring towards. Just as I didn’t see myself as a flawed person who people already took care of in this way, including her. No fixing, no solving.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">________________________________________________<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglc2hWSPjDefmI21ZHrwPY1UWfSKl7pS0vsc1jevTCHY8gWy92ErA1MLGB37yNeBPJupEzP6NTngUwlTHOq_Os7CWkGl6ZM7M3-vJ4MRJ-Jas3Wtkc1HZ4gwLQ3MdtD1VFZeZdIp8yuH4h/s1600/LynnObit.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglc2hWSPjDefmI21ZHrwPY1UWfSKl7pS0vsc1jevTCHY8gWy92ErA1MLGB37yNeBPJupEzP6NTngUwlTHOq_Os7CWkGl6ZM7M3-vJ4MRJ-Jas3Wtkc1HZ4gwLQ3MdtD1VFZeZdIp8yuH4h/s1600/LynnObit.jpg" height="315" width="320" /></span></a></div>
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A Lovely Depression - Vulnerability Without Neediness</h4>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">At 45 my mom was diagnosed with diabetes and a thyroid disorder. She went into early menopause and suffered this very physiological depression.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">She talked about not being upset or sad or angry about anything in her life but just crying all the time. Acknowledging or experiencing overwhelming emotions we know we don’t understand was a rare occurrence for mom and me. We are used to having emotions, but we always felt like we could find their source and “solve them.” (Emotions are viruses, you know.)<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">So her suffering a clearly biological depression was transformative for both of us. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I told her I really LIKED this person I was seeing, talking to me through tears. </span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I felt I could connect to this person. Someone who shared what she felt without translating those feelings into requirements for me.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I also learned around then that if I asked mom questions about herself, I could get wonderful stories. Our talks moved from the analytical observer of others to ourselves.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Armchair civil rights activist.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Feminist.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Angry 14-year old daughter who remembers her mother as fierce and angry.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">A beloved but frustrated wife.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Life. Death.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Motherhood.<o:p></o:p></span></div>
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Gramma<o:p></o:p></h4>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">When mom became Gramma, she very mindfully and intentionally became the compassionate observer. She watched us struggle with what she had struggled with. She offered the loving patience to the grandkids she knew we mom’s had short supply of. She suspended any illusions she had of needs or weaknesses (ours as mothers) being something to solve and she became an observer of our humanity, seeing our identities, as complicated, changing landscapes.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">About this time, she also became an observer of her own body. She had diabetes, an emergency quintuple heart-bypass, heart failure, scleroderma, asthma, thyroid disorder, and auto-immune liver disease. Near death experiences didn’t scare her. She gained a compassion for herself, left behind beliefs that one can build a perfect identity by fixing weaknesses and addressing needs. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Her sense of self and self-love became less cerebral and more organic. Death, weakness and vulnerability made her grateful, eager and appreciative of life. </span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;"> She was a gardner of life, a nurturer, a celebrant – someone who didn’t sweat the small stuff.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">One of the highs I witnessed with her was right after she had nearly died from multiple times from massive bleeds. Over the span of a couple of weeks, my sister and I had been told she was going to die in three different hospitals in two different states. We escaped from the third hospital here in Bellevue after some arm twisting and cajoling and jumped straight from the hospital into the car and shot down the freeway to Eugene. We felt like Thelma and Louis. She spent a spring so JOYFUL and appreciative of beauty. Her garden that year was just fabulous. She couldn’t stop talking about how beautiful life was. Brilliant.</span><br />
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Her garden became the symbol of her joy and gratitude for life.<o:p></o:p></span></div>
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Enlightenment and Facing Your Fears<o:p></o:p></h4>
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<span style="font-family: inherit; line-height: 19.97px;">Mom told me that she asked Dad to die of heart disease. She said she didn’t think she could go through nursing someone through cancer again. Her memories of caring for her own mother when she was a teenager still hung in the trauma of her subconscious. </span></div>
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<span style="font-family: inherit; line-height: 19.97px;">She almost died the same day that Dad died. The stress had triggered her autoimmune issues and she’d contracted some rare, often fatal epiglottis infection. Kaylea and I went into the hospital at midnight to sit with mom in the ICU and tell her that Dad had died. </span></div>
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<span style="font-family: inherit; line-height: 19.97px;">I was also diagnosed with cancer that year and was still bald from treatments.<o:p></o:p></span></div>
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<span style="font-family: inherit; line-height: 19.97px;">For mom, the things she most feared had happened and she survived. A kind of peace settled on her – and a renewed resolution to enjoy what life was willing to give her. </span><br />
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One of the happiest moments in life is when you find the courage to let go of what you can’t change. <o:p></o:p></h4>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ5kIX_lFAeESSra5nbUip2IZ6dfxtbURVPVLhFFRkenTcfuB-eKAYPPVSDG6RopuAEJzVx4gJ9haEzQQz21rqrhyzyJIpeItjKCCDQzQVKh8-WY43iicj7yRaX49WfzqT8GHXY2agi4W7/s1600/One-of-the-happiest-moments-ever-is-when-you-find-the-courage-to-let-go-of-what-you-cant-change_.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ5kIX_lFAeESSra5nbUip2IZ6dfxtbURVPVLhFFRkenTcfuB-eKAYPPVSDG6RopuAEJzVx4gJ9haEzQQz21rqrhyzyJIpeItjKCCDQzQVKh8-WY43iicj7yRaX49WfzqT8GHXY2agi4W7/s1600/One-of-the-happiest-moments-ever-is-when-you-find-the-courage-to-let-go-of-what-you-cant-change_.jpg" height="253" width="320" /></span></a></div>
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<span style="background-color: white; color: #141823; font-family: inherit; line-height: 19.97px;">One of my Facebook friends who has many terminal diseases and has struggled with MS for quite some time wrote recently</span></div>
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<span style="background: white; color: #141823; font-family: inherit; line-height: 19.97px;"><em>I have clear evidence that my life is ending in the near future and you cannot understand fully how liberating that is until you are given that bit of news – Kathleen Lynch<o:p></o:p></em></span></div>
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<span style="font-family: inherit;"><span style="background: white; color: #141823; line-height: 19.97px;">I think this only works for people who have already grappled with terminal disease.</span><span style="line-height: 19.97px;"><o:p></o:p></span></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">My mother’s response to her own impending death was to choose to let it go. With each near death episode, she would tell me she wasn’t afraid to die. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Letting go of the hold death can have over you does not mean giving up or rolling over and dying. It didn’t mean she wanted to die. It’s much more like a shedding of an illusion of control. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">With clear evidence of your life ending in the near future, you gain a freedom from some social responsibility. It’s clear which problems you cannot make a dent in in the time you have left and therefore easier to let a lot of things go. </span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Ego and personal gain become irrelevant. Envy, resentment, contempt, anger, and frustration tied to those ego needs float away.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">It leaves more room for beautiful emotions like sadness, love, joy and gratitude. My mother lived mindfully and intentionally in this space, despite overwhelmingly painful effects of her disease. If you visited her while she was sick, you saw her in this intentional space. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">My earliest memories of my mother are of cuddling with her and listening to her read to me. I loved her body – ample, warm, and soft. In the end, that’s all she wanted from me. To feel cuddled, nurtured and loved. I wish she would have had cancer, with its researched, predictable outcomes and timelines. I wish I would have been able to predict the two weeks needed away from work to go and lie with her and do that cuddling.<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">My mom had more than just good attitude, though. She had what I would call enlightenment, in a kinda Buddhist sense. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">In this place, where ego doesn’t matter and gratitude grows, there is an opportunity to see a beauty in the complex systems we have all woven together. <o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Thich Nhat Hanh writes in <i>no death, no fear,</i><o:p></o:p></span></div>
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<span style="font-family: inherit; line-height: 19.97px;">When you were a child, you may have liked to play with a kaleidoscope. Every movement of your fingers created a wonderful pattern of colors. If you moved it a little bit, then what you see would change. It was also beautiful, but it would be different. You might say that the different patterns within the kaleidoscope were being born or dying, but as a child you did not mourn that kind of birth and death. Instead, you continued to delight in seeing different forms and colors. (Thanh 86)<o:p></o:p></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">I think mom could see us as the kaleidoscope. <o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="color: #111111; line-height: 19.97px;">A</span><span style="color: #111111; line-height: 19.97px;">nd here today, we each bring a experience of mom, a color, a hue, and create a kind of kaleidoscope image of who she was.</span></span></div>
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<span style="color: #111111; font-family: inherit; line-height: 19.97px;">Thank you for coming and sharing.<o:p></o:p></span></div>
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Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com1tag:blogger.com,1999:blog-4346930149063437375.post-57932285111317435742015-01-15T17:10:00.002-08:002015-01-15T17:10:38.847-08:00Mourning while Dying<div class="separator" style="clear: both; text-align: center;">
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I am strangely comforted by my mother's death. And there is a noticable lack of loss. I think a lot of what we grieve when we lose those we love, is the future we imagine(d) with them. If you are successfully working through the process of mourning your own death, then you have let go of your own future. It leaves a lot less to grieve for and a lot more to celebrate. <br />
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I am relieved my mother has died. Her pain and suffering was difficult to witness. It was difficult to decide whether what she thought she wanted was really what she needed. It was difficult to watch overwhelming caretaking obligations turn into spaces where decisions about interventions needed to be made -- again and again. <br />
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She wanted to stay home. She wanted to avoid conflict. <br />
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And her death allowed us to allow this to happen for her.<br />
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But I am also relieved that my mother dies before I die. Death is a lonely concept. It's about leaving the people I love and entering a space nobody understands. I like to imagine my mother, waiting in sleep or in some sort of afterlife. <br />
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I will go home to my mom.Suzyhttp://www.blogger.com/profile/11156774214865034028noreply@blogger.com2