invincible summers

in the middle of winter I at last discovered that there was in me an invincible summer. (albert camus)

rrp & my sister December 14, 2006

Filed under: family,life — clementine @ 8:16 pm
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in 1997 my sister was diagnosed with a rare disease, recurrent respiratory papilloma. there are an estimated 20,000 active cases in the u.s. the disease is characterized by the growth of tumors in the respiratory tract caused by the human papilloma virus (HPV). although they primarily occur in the larynx on and around the vocal cords, these growths may spread downward and affect the trachea, bronchi and occasionally the lungs. it is sometimes referred to as laryngeal papillomatosis and in the past was often called juvenile laryngeal papillomatosis, because it was thought to primarily affect only children. a distinguishing aspect of this disease is the tendency for the papilloma to recur after surgical procedures to remove them. hence, the “recurrent” part of the name. the tumors or growths can be wart-like, often have a cauliflower-like appearance, and are either pedunculated (attached only by a slim stalk), or sessile (closely adhering to mucosa).

she was diagnosed during her senior year in college. friends noticed her voice was raspy. my sister, being very healthy and the star of her college soccer team, went to her local doctor who put her on steroids. this made it worse. she was misdiagnosed three times before her referral to dr. ossoff at vanderbilt hospital in nashville, tn. ossoff, who came to vanderbilt from northwestern university school of medicine, has been recognized internationally as an expert in his field, otolaryngology. ossoff has said that establishing an otolaryngology residency program in july 1987 (the 106th in the country) was one of the department’s first milestones. the residency program began with two residents each year in july 1987. there are three per year now.

he once said, “when we began our residency program the best thing going for us was the good name of VUMC, the reputation of folks on the faculty and our good and congenial relationship with other otolaryngologists in the nashville community. being 106th was certainly not satisfying, so we wanted to ascend to the top third of residency programs very quickly, and ideally into the top 10, becoming a consensus leader in the field. about three or four years ago we reached that goal.”

his office is filled with head shots thanking both he and his staff. his patients include pretty much every country music singer in the world. former presidents. and the late johnny and june carter, who were once in the waiting area with my sister. my mom asked for june’s (not johnny’s!) autograph. ossoff is a brilliant doctor and i have complete faith in him. there is no question my sister is alive because of him. although i struggle with my doctors and they often leave me frustrated and angry…ossoff gives me hope. ossoff and his staff are always trying something new. trying to find something that will work. either to prolong the surgeries or cure the disease. most recently along with the laser surgeries he began injecting cidofovor and an hpv vaccine. they seem to be working. the days of a surgery every four weeks are long gone. now, it’s on average every six months unless the threat of growth in the lungs is there, which is inoperable and leads to death. in that case, she travels to back to nashville the following week for surgery. or in the past, that same day.

somewhere along the way since my sister’s first surgery almost 10 years ago, i lost count of her surgeries. i know they total over fifty. and this friday she will have another. she’s been in and out of remission for a long time. it’s been difficult to say the least. but she is strong. and i will do my best to be strong by her side on friday.

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sis May 23, 2006

Filed under: family — clementine @ 7:37 pm
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dana
she is my sister
my only sibling
as children
we watched cartoons
eating cereal
from a large yellow tupperware bowl
pitfall and frogger
soccer and basketball
hide and go seek
sleeping under the stars
crying one cold winter day when
misty, our beagle, died
soon the darkness hit me
consumed me
and i lost my sister
for she needed only light
and was afraid of the dark
of me
she was the strong one
i was weak
she went onto college
i spent my days fighting my demons
and then
suddenly
a phone call
your sister is sick
a rare virus
silence
complete silence
no words
and i dive
into
research
i need to know what this is
i read of deaths
and then the surgeries began
to nashville we would travel
to the doctor of bill clinton
and the late johnny cash
he says
there is no cure
twenty surgeries,
the first two years
remission
and then it returned
remission
and then back again
she is still strong
remission
another phone call,
while in memphis
this time researching for actors
she says
i am pregnant with twins
another phone call
she says
i miscarried
i am so sorry dana
i cannot cry
i am numb
thanks to the meds
the virus is back
she is now weak
i wait in the room
it is a room i know very well
waiting for her doctor
to tell me and her frightened husband
she made it through
i hear
there was a seizure
but she is ok
i see her
her face, lacking color
her body, frail
and yet again,
i cannot cry
i am still numb
those damn meds
remission
another phone call
she says
i am pregnant
early august 2004
a girl
cecilia rose
but still no tears
two years later and over fifty surgeries
my sister
she is beautiful
she is once again strong
there are still surgeries
and i am still there
with her
she is no longer afraid of my darkness
for now she knows it well
and today,
i cry