after being pulled off of most of his chemotherapy drugs, hubby has ironically gotten sicker. at the beginning of the week, the doctors were congratulating him; patting him on the back and saying that he had turned the corner, the tough part was over, and he would start to feel better soon.
i came back from work last night to find him muddled and bruised, as if he had gone down to the pub, had a few too many and hit on a big guy's girlfriend.
turns out that the reality is far less glamorous: ever since saturday morning, he has had an intense headache that will not quit, and hasn't been keeping down anything other than white bread and water. the bruising was from vomitting so hard that the small blood vessles around his eyes burst; the muddled-ness, a side effect from the compazine and oxycodone he was downing like candy in an attempt to keep the side effects at bay.
we spent an entire beautiful indian summer day in the confines of the apartment. droughts of boredom were interrupted by intermittant puking. he vacillates between sleeping and being sick, and i vacillate between sporadic bursts of housecleaning and sitting on my fat ass, reading. the housecleaning is indicative of a larger syndrome: during the last two months, i have gotten much more domestic than i ever planned to be.
however, the fact remains that i feel like an inadequate partner. no amount of cooking, baking, and cleaning can make his nausea or headache go away. there is no magic recipe to make someone's hair grow back.
i just want to make him feel better.
lance armstrong's snl skit was not that funny.
for more on the lance armstrong backlash, click here
sidenote: in the interest of full disclosure, hubby and i are members of the political arm of the lance armstrong foundation, and wholly support his intentions of raising more money for cancer research and supportive programs for patients and caregivers. however, i have to wonder that his incredible story, in conjunction with the survivors showcased on shows like "today" and "oprah," contributes to creating a very rosy-pink concept for the american public about what cancer survivorship is like.
in the midst of the youth center's annual halloween event yesterday, i met my coworker's 6-week-old infant. she was tiny, delicate, and managed to look well-bred even though she was shoved into a pea pod costume with giant green pillow-like lumps going down the front. it suddenly seems like there are an awful lot of girls my age carrying either a basketball-sized protusion from their abdomens or a pink, perfectly-formed person in miniature in their arms.
i followed the obligatory gushing with an offer to baby-sit once we move back to waldorf for good. my coworker was polite but said, "between my parents, his parents, and my sister, i hardly get to see her as it is," then broke off the conversation and moved to a different section of the room.
surrounded in the room by 100+ happily shrieking kids and their parents, i felt so out-of-touch with what was playing out before me that it was like watching a movie. moms were adjusting the finishing touches before the costume parade, dads were busy wrapping up junior with toilet paper for the mummy wrap relay, and all around me were people whose heaviest concern for the afternoon was how much candy and prizes they'd acculmulate before it was time to leave. i don't know if i will ever get to spend an afternoon fussing over the minutiae of costume details and not getting the yucky candy in my bag. even if we decide to take the chance and adopt a kid in an attempt to become the normal young couple, i get the feeling that we will both be looking over our shoulders for the rest of our lives, waiting for the worst to happen. i would love to have the feeling of carefree fun again, for the only concerns to be trivial ones. maybe i thought that baby-sitting the little green cherub would lend me some of the joy that i saw on the families' faces yesterday afternoon, if only for a few hours. maybe that's why my coworker reacted the way that she did.
is my desparation for a normal family life that transparent?
it was all worth it
got the results of hubby's chimerism test
he is now 100% donor marrow.
or rather, the final sub-chapter of my recent adventures at work.
i was at work on saturday, and my supervisor unexpectedly stops by. which is okay, there was a fair amount of activity going on in the building, and there were no upset kids or parents, which is a successful day in my book.
the following is pretty much a literal transcript of our conversation:
"hey! how are you doing? how's [hubby]?"
"i'm doing okay, [hubby] feels okay, but we are both on edge a little bit."
"oh, really, why is that?"
"he's getting the first stages of graft-vs-host-disease."
"graft-vs-host-disease? what's that?"
"it's sort of a good thing and a bad thing--his new marrow is attacking his body--"
"--wait, isn't that like, 'i invited you to this party, what are you doing, man?'"
"--well, yeah," i continued, "but it's a good thing 'cause as long as it's just minor, it just means that his new marrow is trying to set up its own immune system."
"it's just minor right now?" (supervisor is getting visibly more and more uncomfortable with the conversation, and it's now taken the tone of small talk rather than interest or concern)
"yeah, well, he has a rash all over his face and neck, so that bugs him a bit, he doesn't like to go out in public, but i don't think it's that noticable and i'm glad that he doesn't have a more severe case..."
(super is no longer making eye contact with me)
"oh, what happens with a severe case of this?"
"well, it could attack his liver or his gut; if it gets really severe, it can be fatal."
(super's eyes literally bug out.)
"WELL...we have quite a few kids in the building tonight, don't we? it sure is getting cold outside!"
with that, he turned around and walked double-time to his office and shut the door.
the humor of the situation far outweighed the old feelings of anger that my place of employment was misunderstanding or uncaring, so i guess i've overcome the negativity on my end of the deal.
i just hope that my super gets to remain this ignorant about cancer treatment for the rest of his life, and doesn't have to go through what we've been through. i don't know if he could take it.
score one for me. :)
da hala'i hope da 'ino
2 days of reflection has allowed me to clearly see how dark this experience has become for the two of us.
things are looking up though. after going to the office's employee relations team, i was able to win the battle over my paid leave. after several hours of e-mailing and phoning, my supervisor admitted that he had lost the paperwork that i had submitted for the family medical leave act and that his supervisor had used it as a loophole to bring up the old rule.
all is clear now, i can exhaust my leave, apply to have some donated if i need it, and it was a learning experience for my supervisors. still no apology for treating me differently than my pregnant coworker, but i'll take the victory that i got, thanks. i guess the miracle of birth is a lot easier for people to understand than a bone marrow transplant.
i was very tempted to say over the phone, "i was rii-iight, you were wroo-oong, ninny-ninny-boo-boo" but of course restrained myself as i am a grown-up, or am at least pretending to be one.
hubby's got the beginning signs of graft vs host disease
. this is good and bad news all rolled up into one. too much of it can make the graft fail, or even kill him. however, a little bit of it means that the new marrow is in his bones, growing, and trying to set up a new immune system. it has us both teetering on edge between joy that we have an outwardly visible sign that the transplant is working, and fear that the gvhd could get out of hand and become a life-threatening complication in the matter of an hour or two. for now i'll take the "woo-hoo-the-new-marrow-is-working" viewpoint.
p.s. post title is "the calm after the storm" in hawaiian. thanks to hope
for showing support.
i am so fucking sick of my life right now.
the word "quitting" isn't right, but it's the first word that comes to mind.
hubby's counts are steadily dropping. he is now just hovering above neutropenia. what was supposed to be a brief morning checkup at the clinic has turned into an all-day chill-out with the nurses as he gets two units of whole blood transfused.
the 2-week respite of actually being able to go out in public without a mask is over. i have a week of the clinic and apartment (and sterilizing EVERYTHING) to look forward to.
my supervisors at work have continued in their fine tradition of being the most insensitive boors this side of the atlantic.
balancing work and eric's care was relatively easy in hawaii. it was tough not having family there, but the people i worked for stepped in nicely. i was never expecting it to be as easy at my new post. after all, i did basically use a government transfer to a new base to move my family closer to better medical care.
i don't feel guilty about this and i never will. any one of my colleagues would have done exactly the same thing if they were living in an area where a necessary treatment was not available (there are no bone marrow transplant centers in hawaii).
but i can see how it might ruffle the feathers of a supervisor a bit ('she's not really committed to this base,' 'she doesn't really want to be here,' etc.)
but my supers at my new post are making the transplant into so much more of nightmare than it needs to be.
when i first told my direct super about the transplant schedule, he had the nerve to say, "this doesn't fit in with my staffing plan...can you see if JH will reschedule?"
after i told him that i would be able to work 1 day a week after the transplant (hubby is required by his protocol to have a 24-hour caregiver with him), his response was, "can't you give anything more?"
but what happened on friday really took the cake.
i am close to using up the last of my paid leave. after completely exhausting my own leave (both sick and vacation), i am fortunate enough to have a program with my employer where i can sign up for leave donations from friends and coworkers all over the world.
hubby and i were really counting on this--we have no other income, and we still have our regular monthly expenses, plus copays, plus our health insurance premium (through my work, but i have to pay my share out-of-pocket if i am not earning enough money to cover the cost of my share).
supers call me on friday with some ancient rule about having to keep 80 hours of sick leave that doesn't even apply in this case. tell me that they will not accept my current timesheet, and that they were not aware of any policy that states otherwise.
sent them my paperwork from personnel to no avail. now i am not even sure if i am getting paid for this pay period, or if i will be able to apply for a donation once mine is exhausted.
to top it all off, i found out that a coworker of mine who just came off of sick leave for having a baby was able to apply for leave donation without issue.
why do they have to fuck with me so much? this is fucking stressful enough as it is without worrying about work shit.
spent more "girl time" talking with one of my friends from college this evening.
most of it was spent discussing a mutual friend's pregnancy, the first one of our group. the irony is supreme--the pregnancy was not planned and our friend was one of those rock-star types who managed to frequent most of the bars in the city and still keep her life together. the initial shock has subsided and she is happily anticipating the birth of her baby girl.
the pregnancy is doubly interesting for my phone buddy and i as it is our first vicarious experience of child-bearing. this was not our first exposure to pregnancy in our peer group (we both went to rural, mountain-town high schools--there were girls getting pregnant when we were in seventh grade); but it seems so much more real this time. we have come of the age where one is expected to settle down, start a family, and begin working on gray hair, expanding waistlines, and a mid-life crisis. being pregnant has lost the "after-school special" stigma and has become something that we are supposed to crave. phone buddy and i still aren't so sure that we want to buy into the whole "home-on-a-treelined-street-with-picket-fence-and-dog-and-2.5-kids" modern american life, but as p.b. so sagely put it, "we'll see how this one goes, and then we'll decide if we want kids."
the whole conversation made me think of the phone call we got from the fertility clinic back in july. my amazing husband, in spite of the stresses of moving into our new apartment, putting up with me as i started my new job, etc. etc. decided to be a glutton for punishment and subjected himself to an 8 am spooge-in-a-cup session on the other side of dc. all for the off chance that we might decide we want to conceive someday after the transplant.
our previous oncologists had told us that the chance of us making biological babies was slim. at johns hopkins' urging, we had decided to get tested anyway before he started to take the pre-meds for the transplant, "just in case" there were viable cells that we could save for later. we took this a bit too far and created a whole plan for our family-to-be, hinging to the false hope that the chemo hadn't already rendered him sterile. before the results even came back, we had picked out a sperm bank, discussed how many years it would take for us to be ready to start a family (ie, how many years it would take to pay off the medical bills from the transplant), and even talked about possible names for the little bugger.
one 2-minute phone call was all it took to bring us back down to earth.
the good news = hubby wasn't completely sterile.
the bad news = 80% of cells were immobile, 50% had deformed heads, which translates to the chance of his sperm making a healthy baby was a long shot. the fertility clinic recommended that the expense of banking his cells would not be a good investment. and there was a 99% chance that hubby would be completely sterile after the transplant.
the news shook us both up hard.
several months' distance has allowed some contemplation though. hubby and i had never planned on kids. we were going to be the wild and crazy type that moved to a new interesting area every couple of years without regard to which school district we lived in. we were also planning on having disposable income and travelling a lot, neither of which comes easy when you're a parent.
why are we mourning the loss of the child that we never had? is this yearning for a family an expectation that is programmed into us by society? is this just the next cool thing to do after you get married? worse yet, is this an extreme case of keeping up with the joneses?
25 and i already know that i will never experience the visceral production of a new life inside of my body. but 25, and we still have a whole world of choices in front of us.
why do i want so badly to be called "mommy"?
the wedding was beautiful. it did not mess with tradition and went smoothly as a result. the bone marrow transplant has definitely messed with mine and hubby's heads though. what should have been a loving and emotional experience was instead full of anxiety. the dread settled in before we left baltimore county. hubby looks at me and says, "i feel like a baby bird leaving the nest for the first time." his vocalization echoed what had been going through my head all morning. getting to see friends and family AND participate in my brother-in-law's wedding was an amazing priviledge, but leaving the safety net of johns hopkins and our medical team was terrifying.
things got off to a slow enough start. eating dinner at a (slightly crowded) restaurant was only enough of a threat to raise the Hubby Threat Level from green to yellow. until a family with three kids under the age of 5 sat next to us. for the rest of our meal, the whereabouts and proximity of the rugrats was my chief focus. had any of them received a live vaccine or booster lately? do any of them attend that cesspool of germs otherwise known as preschool? have they had chickenpox? etc., etc., etc.
saturday, hubby woke up at 6:30 to go have coffee with his dad. he woke me up to let me know where he was going, and added that his mom was going to be cooking breakfast. instead of murmuring, "oh, that's nice," or "have a good time," my parting words were, "make sure that she knows that you can't have soft-cooked eggs or french toast."
score two for paranoia.
the actual wedding resulted in enough anxiety for three new stomach ulcers. we were seated at the front of the church, kind of away from people...until everyone and their brother came and wanted to hug or shake hands with hubby. (this was the day after one of our docs told us to "permanently break ourselves from the habit of shaking hands--it's how most germs are transmitted.") the affection was genuine and appreciated, but how many of them washed their hands before grabbing hubby's? the reception hall was crowded and we nervously listened for the telltale signs of airbourne illness--coughing and sneezing. hubby and i were both hungry--by now it was going on 4:30 and nothing to eat since a small breakfast--but the food was set out buffet-style, another no-no. i grabbed him a plate of cookies right as they came out of the kitchen (before people could stand around and breathe on them), got a fresh cup of punch, and hoped for the best. at dinnertime, the reception staff were really cool about letting me go back into the kitchen and getting food right out of the giant fridge instead of grabbing stuff off of the buffet for hubby. but my heart sank when i got into the fridge and the rest of the food was already on the buffet trays. how long had it set out while they were artfully arranging it on the tray? did the staff wash their hands before and after handling the meat each time? did the sandwich stuff originate from a deli where it sat out in a big display case for days and days? 'man cannot live on cookies alone,' i told myself and made hubby a sandwich. i got back to the table and gave hubby his sandwich when we realized that i had left our hand sanitizer in my other purse.
i sat and tried to eat while hubby ate his sandwich of meat-of-questionable-origin with his hands after making contact with almost every person in the tight confines of the reception hall. 'this is it,' i thought, 'he is going to catch a bug that is going to interfere with his graft and make him really sick. and it is my fault for not remembering the hand sanitizer or making sure that he had clean food to eat.' i managed a few bites of the food on my plate and could eat no more.
we have been dealing with acute lymphocytic leukemia for seven years now. this is the first time that the cancer has ever affected our thought processes so severely. is this something that will subside with time, or are we doomed to an existence where every public encounter is an invitation for new microbes and viruses? it is easy to make sure that the hard surfaces in our apartment are cleaned with clorox, that our linens are washed in hot water, and that all of our food is washed, sanitized, and/or pre-packaged. however, the world outside of our apartment is a dirty and henceforth scary place.
score three for paranoia.
got leave from the clinic to go to hubby's brother's wedding. we leave baltimore tomorrow, for 2 whole days.
selfishly, i am more excited about leaving eric with family members and going out with some of my friends from high school. i'm a witch, but it's the first real "girl's night out" that i've had since i moved back to the mainland.
the doc only approved us to go on saturday (drive, go to wedding, drive back). our nurse practitioner is letting us go friday through sunday. i'm working on paying her off with chocolate chip cookies. happy baking!
we got out for the first time since we moved to baltimore today! hubby's blood cell counts are bouncing back after bottoming out at the beginning of last week. we got the nurse practitioner's ok to go to the family wedding on saturday, and we might even be able to stay the night on saturday. went to the mall to buy outfits to wear to the wedding. so much good news in one day inevitably sets one up for failure.
it was at the mall that i realized the psychological toll that this whole process has had on me. hubby was tired out by the experience but ultimately had a productive trip--he got one sharp-looking suit at the first store we went to.
i on the other had had the rather humiliating experience of going to 4 different department stores and not finding even one dress that would even remotely fit me. looking in the mirror under the dressing room lights was a shocking experience. since his leukemia came back, i've put on 30 pounds, found 4 or 5 new grey hairs, and have aged a lot more than i should have in 6 months' time. i have stretch marks in places that only pregnant ladies should get them. i am no longer attractive, nor do i look like a healthy 25-year-old should.
i believe that making substantial investment in one's looks is vanity and therefore a waste of time. however, there is a difference between vanity and taking care of one's self. i am growing weary of my role in this whole mess. i am sick and tired of not being able to be lazy and whiny when i'm sick; of not having the time to establish any kind of social connections in our new town; of having to ask to spend the money that I earned on random stuff for myself--i understand the need to keep non-necessary spending to a minimum but i work hard enough to keep this ship afloat that if i decide i want a new purse or something i shouldn't catch shit for it. i'm tired of the stupid medical bills, of being viewed as the "charity-case-of-the-month" in somerset, and most of all, of not having a normal life. the closest thing i have to a friend in the baltimore-washington corridor are the damn clinic nurses.
i just want to be able to have my own life that is not affected by cancer. i want to be able to take care of me again. this has gone on long enough.