Sleeping like a baby
Day +2 (October 26, 2012)
It's like Lorelei took us seriously with the whole "Oct 24" is your new birthday. She's been like a newborn baby ever since; up all night and asleep most of the day in between feedings. And it takes every trick up my sleeve to get her to eat. She's nauseated and has very little appetite but they tell her she has to eat. The hardest thing for Lorelei about eating on this journey is having to order food from the hospital menu. Lorelei has to follow a "neutropenic" diet which means she can't eat anything that has the potential to carry a live virus, fungus or bacteria. So, no fresh fruit or vegetables. Everything has to be cooked fully. She can't even have pepper because it is not cooked before it is ground. The hospital menu (from which she orders meals) is full of foods she's not allowed to have. So it's like torture to see it. That "chicken Caesar salad" jumps out at her but she can't have it. She's suggested they come up with a Neutropenic menu that does not include forbidden items. But for now, she just takes "pot luck" with meals being delivered automatically and then doesn't eat them. And I call down and ask for some macaroni and cheese or half of a PBJ and beg her to eat that.
The whole transplant process amazes me. How do they know the right time to infuse the stem cells? What if they infuse them too soon after the high dose chemo and it somehow kills them too? I've been assured by the doctors that Lorelei's bone marrow is dead but the residual effects of the chemo won't kill the newly infused stem cells. When we ask why she still has a white blood count, they explain that these are measuring the residual cells that were made prior to the bone marrow's destruction. For example, if Ford quit making cars today, there would still be Fords on the road for a while. So, Lorelei's bone marrow is the Ford factory. It's shut down. But the new stem cells are finding their way into her bones and will eventually take up residency in them and start the new factory going again by making new marrow which will make new blood. In the meantime while she is living with dead bone marrow which means she is very vulnerable. She has no immune system. She'll need many blood transfusions until her new bone marrow "grafts in." That's what they call it. She has to have a neutrophil count of at least 500 for three days in a row before they will consider letting her go home to continue her recovery. The earliest anyone has ever reached that point has been thirteen days past transplant day. So, Lorelei wants to beat that goal. Unfortunately, there's not much she can do to make that happen on her schedule. She's so competitive but this is one process her determination and competitiveness can't rush. In the meantime, she takes an antibiotic, an anti-fungal, an anti-viral and pretty much any anti drug you can imagine. So far no fever. But fevers are common during the grafting process.
Lorelei's resting heart rate has been elevated. Right after chemo her resting rate was 120 bpm. So, the doctors ordered an EKG to check her heart. It showed tachycardia but she's in sinus rhythm so the heart's not a problem. Maybe her thyroid. So they did a TSH test and indeed her TSH is low.That indicates hyperthyroidism which could be the cause of the tachycardia. Hypothyroidism runs in our family and the doctor knows that. I asked him why she might be "hyper" instead of "hypo" at this time and he said it could be some sort of "super nova" type of thing where her thyroid makes its last hurrah before pooping out. I'd be upset about the early demise of her thyroid but we know it will likely be killed by the radiation of her tumor, so she'll likely need some sort of thyroid replacement medication eventually anyway. In the meanwhile they call her condition "sub-clinical" so they don't plan to treat it with anything except a low dose beta blocker to slow down her heart. It's good now.
An interesting thing we learned is Lorelei really will be like a newborn baby. They've pressed "reset" on her entire immune system. So, she doesn't have any of the immunity she used to have. Even though she's had chickenpox, she can now get it again. We'll have a talk with her doctor about repeating her childhood immunizations again when it is the right time.
Well, it's time to go to bed now. They'll be in here in another hour to wake her up for midnight blood draws. Sleeping just like a baby.
Posted on Fri, October 26, 2012
by Andrea Decker