what a difference a day makes

yesterday was the anniversary of the date i first went into the hospital, three years ago. i never knew a day could change my life so radically, but then again, as the old clichee goes, what a difference a day makes.

my doctor had called me back late that afternoon with my blood test results. i think i may be the poor guy’s medical bete noir; i’ve thrown down shingles at him as well as other interesting medical predicaments. you know, he said to me, your reds and whites look fine to me. but its weird — something must be wrong with the test — we can’t get a reading on your platelets. he had already seen how i was black and blue all over (crack whore, the description my beloved pal jaxx had given me a few days later, was how i truly looked); when i told him about today’s joys, a never-ending nosebleed and the fact that i was, er, let’s just say hemorraghing, he told me that perhaps i ought to hit the ER.

my best bud murph ran home from work, stayed with my kids, and BS and i hit the ER. and waited. and waited. and waited. two men who were also waiting are forever pinned in my memory: one, walking around with his urine sample and complaining bitterly of the pain he was in, and another, whose stitches on his knee had opened and who was raining blood down on the floor two seats down from me.  i felt this eerie calm, like i was sleepwalking, as i marvelled at the men. jesus, i said to BS, one guy has a urinary tract infection and is screaming like he’s about to die. i’d expect that from a woman in labor, but if every woman with a UTI screamed like that — and it can be painful, i know — the world would be wailing. and i just watched the blood drip…drip…drip onto the floor from the other man’s knee. later, i would watch a cleaner come and mop it up. and then mop some more elsewhere.

ew.

anyway, the ER nurse, when i finally saw her after giving blood, proceeded to laugh at me as i recounted how my previous day had gone down: i had dropped one child off at school, gotten on the bus and gone downtown, walked a half mile to my office, worked, met friends about a half mile away for lunch, walked back, worked more, walked to get the metro, took it to hellboy’s preschool, picked him up, picked up the car, drove over to pick up BC and BS at BC’s school, went home.

did you not notice you were tired? she asked.

i replied, i’m a mother of two young children. i’m always tired.

apparently, not tired enough to notice that i had almost no platelets left in my system. normal levels of platelets are 150k – 400k, for you trivia buffs. below about 30k, they want you in the hospital. below 10k, you’re in danger of your brain bleeding.

when i hit the hospital’s ER, i had 2k.

(yeah, i’m an overachiever.)

no one knew why my platelets had disappeared, but they threw some platelets in me to try to get me stabilized. i ate those suckers up like wheaties; the benefit didn’t last long. idiopathic thrombocytopenic purpura was the term thrown at me. which, in english, means your platelets have fallen and they can’t get up. one theory was that my son, who had been ill, gave me some regular old, garden variety childhood virus that i had never had (and which makes grownups quite a bit sicker, apparently.) so they gave me some antivirals.

they also pounded me with steroids. after a few days, my platelets went up to a respectable 36k, so they let me go home with the stipulation that i hit the hematologist the very next day.

and hit it i did.

when i visited the hematologist, my platelets were back down to 4k. whee! this gave me a free pass for a bone marrow scan. i hope none of you, NONE OF YOU, ever have to get this. i wouldn’t wish it on my worst enemy. you are awake. there’s a tiny bit of local, but you feel the scraping of the doctor inside a piece of your hip bone. the pain is excruciating, like childbirth, only with childbirth, you are pretty sure you’ll have a happy outcome. with a bone marrow look-see, you’re praying for the best possible outcome, an outcome that doesn’t involve a horrible illness that will shorten your days. the technician helping my doctor gave me a tiny little bear to hold. i was grateful for the kindness, but i was lacking the will to be creative that day. i named him platey. he rides in my car to this very day.

and while they scraped around inside me, i talked. i talked about jamaica. i talked about the sunblue waters in which i once swam, in which i once snorkeled and saw the most beautiful, colorgleaming fish, fish i never think i’ll see outside of an aquarium. i tried so very, very hard to be anywhere but in that little room. i wanted to think about a place where i had been so very, very happy. and i didn’t want to think about my children, as i couldn’t bear to make any mental leaps about my children and sad, sad, news that hung over me like a shroud.

when it was over, i had to wait for my doctor to get it all together. he was going to look under the microscope himself. the longest half hour of my entire life. i sat there and planned my funeral. who would be at my funeral? where would i be buried? what songs would they play? who would be looking after my children? how would my husband cope? would my parents ever recover from this or would this kill them, too? i tried so very, very hard not to cry. but i hurt, inside and out.

soon, BS joined me in my personal circle of hell. and the doctor broke out his little slide and started to look. come here, he said to BS. i want to show you something under the microscope. surely my hematologist wasn’t going to gleefully show my husband my death sentence, swimming around on a little slide. surely it would be a sick and cruel thing to do. i sat up as straight as i could.

see, these are platelets,” the doctor showed BS. “tons and tons of platelets.  she’s making them, which is a great thing. your wife has the hardest working platelets in show business. something must be killing them on their way to the spleen or at the spleen.” in other words, i was having some sort of crazy autoimmune episode where my body marked my platelets as invaders and shot them down. giving me more platelets wasn’t going to do anything but give my body more opportunity to shoot down more little platelets.

the good news: not cancer.

the bad news: back into the hospital with lots and lots of steroids. BTD (aka my brothuh the doctor, for those of you new to the place) was totally in the act now, talking with the hematologist, telling him about when he had ITP and then was discovered to have CVID. the pieces of the puzzle were coming together, although my hematologist, unaware at the time of any genetic link for CVID (or any link between ITP and CVID for that matter), was absolutely gobsmacked. when this is all through, you need to see my friend in bethesda. he needs to take a look at you and help you figure this out. this is amazing, this is. (and i do now see his friend in bethesda. every 6 months.)  in the meantime, have you tried giving her IVig? my brother asked.

IViG was very difficult to come by then; i had heard that they were saving it and sending it out to the troops in Iraq, though i’m not sure how accurate that is. but i knew my brother couldn’t get any for me at his hospital. my hematologist probably gave away his first born child for me; he somehow finagled three treatments for me from other hospitals. too bad for me, no one knew i would have a hideous reaction to it my first time. once i premedicated with benadryl, though, things were looking up.

after nearly two weeks in and out and in the hospital again, i was set free. my count was improving, though i had to stay on massive doses of prednisone for months afterwards, which made me a little teeny eentsy weentsy bit psycho..heheheheh. (and waaaaay fat. but better to be fat than be dead, i always say.) but over time, i improved and improved. i was so grateful for all the support my family and i received from friends and coworkers. my boss — hell, the entire organization — could not have been more wonderful in my absence.

but that day completely changed the course of my entire mental state, my entire perspective on my life, my family, my work, my very existence. today, i am relatively healthy — my platelets were clocking in at 215 when they were checked in january — but i know now that every day being well, being on my feet, being here — is a day that i wouldn’t trade for anything.