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In April 2002, our daughter Elizabeth
(Liddy) was diagnosed with Ewing's sarcoma. Liddy died on January
15, 2004. She was 37-years old. We knew nothing of this disease and
of the journey that lay ahead for Liddy and us after we read the
original pathologist's report. The reactions of grief, loss, despair
and depression that we experienced during the 21 months between her
diagnosis and her death and since then are normal and
understandable. But knowing these reactions are normal does not make
them go away. We have found solace in our religious faith. We have
benefited from the love, concern, good-wishes, and prayers of our
family and numerous friends who reached out to help her and us in
any way they could. We have benefited from attending meetings and
making friends at Gilda's Club and sharing our hopes and fears with
each other. And, we have benefited from the spirit and
accomplishments of Liddy during her journey with a cancer that was
relentless, metastasizing to lungs, to her brain, to her
abdomen. She alone, as each cancer patient must, had to deal with
the unsettling concern of not knowing if, when, and where the cancer
will develop next. She alone endured the side effects of the
extremely rigorous treatment regimens that she had. We could be
there to give her our love, comfort, care and encouragement, but it
was her body and her mind.
Liddy was a computer
scientist by education and she approached her cancer as "just
another problem to solve". She read extensively about the cancer,
various treatment regimens, the results of clinical trials, and she
developed a small network of people—patients,
caregivers, and loved ones—who
found it helpful and consoling to discuss their sarcoma situations
with one another. Many became her (and our) personal friends. Each
meeting with one of her doctors—oncologist,
neurologist or radiologist—began
by reviewing a small, well thought out, prioritized list of
questions and a recital of her observations of her physical
condition. From early on, she kept a personal journal on the web in
which she would record thoughts that indicated how she was feeling,
her analysis of various drugs, treatment regimens, and some common
everyday things, such as what she ate, who visited her, and what
things she was planning to do.
Before
proceeding on to the formation of the
Liddy Shriver Sarcoma Initiative,
we should tell you a little bit about the nature and course of
Liddy's cancer. Sarcomas
are rare and dangerous cancers in adults. They account for only 1%
of all adult cancers. Her cancer, Ewing's sarcoma, is an aggressive
cancer, i.e., it grows very quickly. As such, it needed aggressive
treatment. After three months of chemotherapy, Liddy's primary
tumor, which was in a nerve in her left thigh, was surgically
removed. We learned after the surgery that it had metastasized to
her lungs. She had post-surgical radiation and additional
chemotherapy. These new tumor sites started out as "micromets"
but one, in particular, grew quite large very quickly. The tumors
in her lungs did not respond to the chemotherapy and new tumors
continued to grow. She participated in a couple of Phase I clinical
trials that used various experimental drugs, none of which stopped
the tumors' growth. Two to three additional chemotherapy regimens
were tried after these clinical trials. Then a life-threatening
event occurred with only the briefest of warning. The disease
metastasized to her brain. She underwent an emergency craniotomy to
remove two golf ball sized tumors from her frontal lobes. We were
told that we should only think in "terms of months, not years" for
her life expectancy. She miraculously recovered from that operation,
endured a complicated and painful chest tube experience, had more
chemotherapy, and emerged from the hospital three weeks later. She
and her husband Tom then spent several weeks with us in our home.
The first scans after the craniotomy revealed that more brain mets
had developed and the one near her occipital lobe had grown. She
underwent whole-brain radiation and, concurrently, radiation therapy
to treat the largest and most dangerous of her lung tumors. The
radiation therapy was the first treatment that had any effect on the
tumors! The large tumor in her lungs had actually shrunk a small
amount as did the brain tumor in the occipital lobe. But this was
only a temporary reprieve. A tumor outside the lungs appeared and
grew toward one of her kidneys. The tumors in her lungs continued to
grow and new ones appeared in her brain.
Throughout all of this, Liddy kept on writing in her on-line
journal, researching the literature, making additions to the medical
data she had been posting on the web, corresponding with her family
and friends, helping some of them over difficult moments. And, what
has amazed so many people, is that throughout all of this Liddy
biked as often as she could and wherever she could, whether it was
on a trainer in her home or on our deck, an exercise bicycle in the
hospital, or on a bike path or the open road. Liddy was an avid
cyclist and biking was an integral part of the way in which she
approached dealing with her cancer. As her disease became
increasingly serious, she decided to do some of the things that she
had always wanted to do. Among the list of things was going on a
few multi-day bike tours. And do them she did. A 200-mile 4-day
bike tour in Louisiana, a 6-day bike tour in Denmark, and a
multi-day foliage tour in New England.
When it came down to the
last six weeks of her life, we were given a very special gift
because she was in hospice care in our home. The gift of being with
her: to care for her, comfort her, stroke her, read to her, talk
with her and at times “be her voice”, to help her with her
beading and other projects, to play the music that calmed her and
made her less anxious, give her ice chips for her dry mouth and her
dry lips, to kiss her, and to tell her how much she was loved and
admired. So many people are not given the gift of being with their
loved ones as they take their last steps on their final journey. We
were truly blessed. And, as Liddy slipped away, we sensed that she
knew we were there trying to help her along the way.
She
is an inspiration to everyone who becomes aware of what she did
during her 21-month encounter with Ewing's sarcoma.
She accomplished so much
with the way she approached her cancer. She helped people understand
some of the complex medical issues involved in dealing with and
treating cancer. She brought parts of our family back together. People from around the world have read her journal. She was,
directly and indirectly, a consolation to others. It was in
recognition of these "lessons of the human spirit" and our
desire to permanently capture them for future generations of sarcoma
patients that we formed the Liddy Shriver Sarcoma Initiative.
We hope it can be of service to the sarcoma community.
Peace,
Bruce and Bev Shriver
January 2004
Guest Book
You can read the entries in our Guest Book
by clicking here. We invited to send us an entry for the Guest Book
by
clicking here.
Pachelbel
To listen to one of Liddy's
favorite pieces by Pachelbel,
click here.
You can resize, move, minimize or close the window
that appears as you wish.
Update on Liddy
You might also
want to read the notes in a portion of the "Update
on Liddy" messages that we occasionally sent to
family and friends (see the last button on the left,
above). |
