going, going, gone
hubby is trudging on through the daily routine of 1) wake up, 2) eat breakfast, 3) wrap chest in plastic and shower, 4) report to clinic, 5) sit and be a good boy while the nurses fill up a whole i.v. rack of drug drips that aren't going to make him healthier or feel better for the short term. he is now neutropenic and has virtually no immune system left. it is not safe for him to leave the apartment, or the sterile prison of the clinic, without the label of a surgical mask plastered across his face. this is part of the game, and we have several weeks of "every speck of dust is a threat", and not being able to walk through public spaces without perfect strangers knowing what our story is, to look forward to.
this is ultimately for the best, although we will not know if the transplant worked until day 30. we no longer live by the julian calendar but by the calendar that the nurses prepared for us. there are no saturdays or wednesdays or thursdays, but time is measured in days before and after transplant. hence 20 more days until we find out if this was all worth it.
questioning why this has happened to us again. we are stereotypical "good people." hubby was an eagle scout for christ's sake. karma is not working for us. why try to follow the rules and be a good person when shit keeps falling on you anyway? trying to quell the wave of lawlessness that is brewing in my head...
back to back days of cytoxan
. the clinic was hopping today. there were so many patients that i started to feel funny walking around with my full head of hair.
i go back to work tomorrow to a one-day per week schedule. it's gonna be a shit storm.
The transplant went okay yesterday. We were at the clinic all day and
eric was attached to an iv pump all day, so mobility was limited. the
whole event was very anti-climatic, the bag of marrow was smaller than
expected and was administered just like a blood unit. the most
stressful part of the day for eric and i was trying to pick out a gift
for our donor (hubby's brother). we both put a lot of thought into it
but there just isnt a gift out there that screams "thanks for the
organ donation." not exactly a hallmark card for that one. (we
settled on a manly silver chain--apparently, jewelry is an all-purpose
gift for men as well as women.)
i'm going back to work one day a week starting this saturday. hubby's
doing ok, his hair hasn't fallen out yet and we look and act a lot
more normal than a lot of the other patients at the clinic. I guess
this means we are either weird or resilient. the clinic is a
depressing place--every one else there is all sad and quiet and stuff
(except for the nurses, who are mostly our age and seem to appreciate
that we don't act like hubby's on his deathbed.) sometimes i just feel
like telling people to get over it, stop feeling sorry for themselves,
and to make the best of the time that they have there. there's an old
guy who comes in every day and tells everyone within shouting distance
that if he dies from this, he is okay with that, he's had a full life,
blah, blah, blah...hubby and i both want to beat the crap out of that
guy. (my bitchy streak has apparently not subsided as a result of
this experience.) :)
no pictures yet. (at least that i can upload to a public computer.)
we are staying in the renovated church home hospital
, where edgar allan poe passed away. we have not experienced a haunting yet, but sometimes the toilets make a weird noise. it's on several lists of haunted places in baltimore though.
our new neighborhood is gritty and diverse. very latina right where we are at, with the tourist area of fells point
directly to our south, and little italy
to our south east. there's also a (still-operating!) adult movie theatre
with a double feature every night. it may be a weird thing to notice but those theatres are few and far between in these days of moral decency, v-chips, and family programming. most are simply content to sit at home and watch cadavers being dissected or people eating pureed rats on television.
this isn't going to be so bad.
on your mark, get set, go!!!!!!!!!!
hubby and i arrived in baltimore monday afternoon. our temporary quarters are nicer than our own apartment, with a few overlooking downtown baltimore and huge, sunny windows. surgery was on tuesday, to get another hickman catheter (his medicine port), and chemo started yesterday. things are going well and i will hopefully post some pictures of us and our new area soon.
11th hour reprieve
september 7th was an eventful day at johns hopkins, filled with legal paperwork and hygiene classes (yes, we had to learn how to clean hubby's surgery sites and body to prevent incidental infections). at the end of the day, we found out that the transplant had been pushed back 4 days.
chose not to go back to work because 1) all of the junk paperwork for the family medical leave act had already been submitted, and it might take an act of congress to change it now; 2) my gram was in the hospital this week for her second knee replacement; and 3) my coworkers don't seem to know the difference between a bone marrow transplant and a cold. so we drove to pa to visit with family one last time.
it was in pennsylvania that i realized that i am the most vicious green-eyed monster in the whole world. i got tired of assisting my gram at the hospital because i am quite tired of being around sick people in hospitals. i got mad about the article in our hometown newspaper (see here
) because hubby put a special thank-you in for his brother, the donor, while i only got mentioned as the wife. got pissy at a family dinner because hubby and brother were toasted by the family and not me. the transplant has not even started yet and i have already been transformed into a rather putrid example of a human being.
tried to explain to hubby why i felt the way i did, but the reasons seemed even more petty and ridiculous as they became audible. the donor (hubby's brother) has an important role but he is only there for three days and then gets to resume life as normal. so far, here's my tally (not like i'm trying to keep score or anything):
1) moved 5000 miles from friends and a job and area that i loved to a new job and area that are less than stellar so hubby could be treated at johns hopkins;
2) fought with new boss and turned in stacks of paperwork so that i can take all of my leave (6 weeks saved up) to take care of hubby;
3) keeping the job that is less than stellar so that i can provide money and health insurance to hubby;
4) balancing work and caregiving for hubby for at least 2 months (this was the only way that my new boss would agree to give me the time off without comment).
i'm not looking for a medal or anything, but i wish that someone would ask how i'm doing instead of how hubby is doing. also, i wish that i had people to go out with here in our new town and talk about things other than the cancer treatment.
i am the most jealous person alive.
i have held off on making a comment about the louisiana disaster because hubby and i have been limiting our exposure. what happened is inexcusable and i am not trying to diminish that; however, emotions are running high in our household as the transplant date approaches and looking at stock news images of dead children and looters doesn't do much to lift our spirits (which are in need of one lately).
i finally found something that enraged me enough to break my silence. bush et. al. have demonstrated to me countless times that they do not care about the ill, the poor, and countless other subgroups of our society (see here
)--but now that lack of empathy is finding its way onto newsreels and magazine articles. below is such an example--courtesy of the magazine, The Nation.
Barbara Bush: It's Good Enough for the Poor
John Nichols Tue Sep 6, 1:08 PM ET
Finally, we have discovered the roots of George W. Bush's "compassionate conservatism."
On the heels of the president's "What, me worry?" response to the death, destruction and dislocation that followed upon Hurricane Katrina comes the news of his mother's Labor Day visit with hurricane evacuees at the Astrodome in Houston.
Commenting on the facilities that have been set up for the evacuees -- cots crammed side-by-side in a huge stadium where the lights never go out and the sound of sobbing children never completely ceases -- former First Lady Barbara Bush concluded that the poor people of New Orleans had lucked out.
"Everyone is so overwhelmed by the hospitality. And so many of the people in the arena here, you know, were underprivileged anyway, so this, this is working very well for them," Mrs. Bush told American Public Media's "Marketplace" program, before returning to her multi-million dollar Houston home.
On the tape of the interview, Mrs. Bush chuckles audibly as she observes just how great things are going for families that are separated from loved ones, people who have been forced to abandon their homes and the only community where they have ever lived, and parents who are explaining to children that their pets, their toys and in some cases their friends may be lost forever. Perhaps the former first lady was amusing herself with the notion that evacuees without bread could eat cake.
At the very least, she was expressing a measure of empathy commensurate with that evidenced by her son during his fly-ins for disaster-zone photo opportunities.
On Friday, when even Republican lawmakers were giving the federal government an "F" for its response to the crisis,
President Bush heaped praise on embattled
Federal Emergency Management Agency chief Michael Brown. As thousands of victims of the hurricane continued to plead for food, water, shelter, medical care and a way out of the nightmare to which federal neglect had consigned them, Brown cheerily announced that "people are getting the help they need."
Barbara Bush's son put his arm around the addled FEMA functionary and declared, "Brownie, you're doing a heck of a job."
Like mother, like son.
Even when a hurricane hits, the apple does not fall far from the tree.
the o. c.
no posts for a while due to the computer crashing. we had to completely reformat. fortunately, a lot of our pics were backed up.
we leave for baltimore tomorrow. we're not ready to go at all. we have been putting off all of the prep work that goes into an operation of this magnitude. the procrastination is a side effect of the increasing anxiety that we both feel as september 16 grows closer.
we were in ocean city for the weekend as one final hurrah before we head to our city of dreams. although we weren't sure how we would feel about a beach that was so developed and built-up, we had an amazing time. hubby and i spent tons of time on the beach and in the water, reconnecting ourselves to the rhythm of life outside of work and traffic and all of the things that just don't matter at the end of the day. in the evenings, we danced down the boardwalk to the buskers pouring their souls through the small holes in a harmonica. we shared a funnel cake and got our picture taken as a couple from the 1920s. it was a perfect send-off to our lives pre-transplant.
tomorrow we dive into the deep end and hopefully we'll emerge cleansed of leukemia.
here's to many more romantic weekends on the beach.
straight gangsta, 1920s style
excitement and flashing lights
i witnessed my very first high-speed police chase this past saturday while driving home from work. just driving down route five, minding my own business, when all of the sudden a truck with two atvs on back comes blazing out of the traffic coming the opposite direction. one of the atvs was hanging off of the bed, onto the ground, and was ON FIRE. as in three foot flames shooting off of the back of the atv.
if this wasn't enough, five cop cars come blazing after it.
saw it on the news later that night and it was an armed car-jacking in hughesville (about five miles south of waldorf). brothas jacked dat hoopte and wuz rollin' back to da d.c.
life is exciting in the dc metro area. but it is exciting for all of the wrong reasons.
(if you don't believe me click here