It’s been a slightly more eventful week and a half than we’d hoped, and yes I’m updating early… you lucky ducks! You need numbers? I got numbers. So settle in ‘cause here we go.
We last saw Paquette two weeks ago this coming Monday. Lisa’s platelets were on the rise, although the hemoglobin was tagging along behind. He pulled her pic line, and sent us on our way.
Lisa’s Mom came for Thanksgiving. We knew she needed to see Lisa, and hoped we’d waited long enough that she would appear on the road to recovery. At first we succeeded. Lisa was puttering around and seemed pretty un-sick-ish. We had Thanksgiving dinner cooked by Whole Foods. They do a fine spread all things considered. If you ever find yourself needing to celebrate a cooking holiday during a bone marrow failure crisis, I highly recommend. All was good.
Then, Lisa got sick. Fever. Puking. She was convinced that it was eating a bag of dried apricots, but the fever quickly told us otherwise. She had the flu. Stomach flu. And she had no immune system, so we had no idea what to expect.
Sick on Sick. That’s what I call it. Flu on AA. But Theo doesn’t like to call Lisa sick. It doesn’t jive with what he sees most days. He thinks of ‘sick’ as something you get that you can get rid of, and she has something that’s not working. So he calls this her disorder. He doesn’t care that my nice title is messed up with Sick on Disorder.
Anyway, we knew Lisa was susceptible. And somehow Boy in the Bubble be damned, she picked something up. So Lisa’s Mom’s last day was the start of that illness, so it really freaked her out. There wasn’t enough lipstick to make that pig look healthy.
Then, Lisa’s body got to it, and she pulled out of the nosedive. She managed to get herself healthy again. Just in time… for Theo to get the bug. Yay! I wasn’t home so Lisa being a mom first shed the bubble and dealt with Theo’s vomit, and we wait to see it the cycle will repeat.
Finally last night Theo seemed on the mend. Lisa seemed like she was getting past the stomach thing, which of course took her a way longer than it normally would have. All is good. Until she turns to me on the couch and her nose is bleeding. Bloody hell. Literally.
I can’t tell you that we took it in stride. We did not. It really threw Lisa for a loop. She wasn’t bleeding a lot, but enough for us both to know her platelets had probably dropped. This is our first two weeks without blood draws so we don’t know where she is. But, my blood math should have put her at about 25k-30k based on the trajectory she was on.
Bleeding starts at 10k.
You do the blood math!
I totally understand Tom Cruise buying the sonogram machine. I’d cash in a fistful of my McDollars right now to own a blood math machine. I’d draw that blood all day long, jump on the couch and yell out the numbers. I so would.
At least everyone’s stopped puking!
So, now we’re in real time.
Today she goes for a drop-in blood draw. She’s really low emotionally. And we expect her to be low plateletally.
We just got the call from Paquette that her platelets are actually up – 33k. That’s great! That’s huge!
But, her hemoglobin is 6.9 – down from 7.3.
Low. Very low. Still he seems happy with these numbers. He tells us we have to be patient. Easy to say when you haven’t been under the hemoglobin transfusion level for over a month. Which, by the way, I haven’t either. Just, hard to walk through life like this. Going up the stairs one flight leaves her winded.
But, we will do our best to listen to him. And not get discouraged. It’s hard.
I gave Lisa three of her Hanukkah presents today
Lisa and Theo with her new plush red blood cell…
Her plush red blood cell, platelets and white blood cells all made to spec… god bless the internet:
By the way, in case anyone was just sitting around wondering how much 4 bags of horse serum costs, wonder no more – $140,000. I could have just bought her the fucking horse.
You know bunny serum is like a grand, but they’re all like ‘horses! noble! galloping! majestic!’ and you’re all like horse-lady! And then you get a bill for 140k. Actually you get a bill for 192k because there are a few days of nursing and hospital food thrown in there.
Which means her bill is what her platelets should be. And her platelets are what I wish her bill would be.
And our stay at St. John’s was just denied because they never had the balls to make a diagnosis so they classified us as anemic. Like your Grandma’s anemic. But that should get worked out pretty easily.
So far our insurance has actually been amazing, and Paquette is a full provider, so that 192,000 bill? We owe 100 bucks. We hit a 1/4 of a million in less than two months, and owe less than 2 grand.
How do you do this without insurance?
In a supremely unlucky situation we have been nothing but lucky-lucky-lucky.
So, that’s what I’ve got. Oh, except that I’m leaving for NYC in the morning. I have to go for work. All of you folks who are on call for the weekend, know that her red blood is so low. The less driving and doing the better.
I really thought this whole health thing was going to be fun, but it’s not turning out that way.
So, I’ll be back Tuesday. Wednesday we see Paquette. If Lisa keeps dropping, she’ll need red blood.
And so it goes.
Love you guys. A reminder she was on the Thanksgiving update of gratitude, but not this pile o’ sour grapes (I jest. We’re holding onto as much gratitude as we can.) Send her your love, but don’t forward her the update. Her choice not mine. The takeaway? We don’t quite know what to think, but as always, Paquette makes up feel better.
Imagine Lisa with more of these: