Delay in Transition

This was supposed to be the week when Kristina transitioned from Seattle Cancer Care Alliance (which we have been referring to as Fred Hutch, for the hospital where it happens) back to her original oncologist.

That has been delayed. She’s been having some headaches and diahrrea and a low-grade fever, so there is some concern about Graft Versus Host (GVH) Disease. She’s been having some of that in her gut and her skin, and as she comes off her various meds, it may be cropping up again. And it may be moving from “recurring” to “chronic,” a new category we don’t want to enter.

The day of this post is day 100 since the transplant, the time when out-of-town patients start heading back to their hometowns, and by now Kristina was hoping to be done with Fred Hutch, rid of her catheter, and so on. Not so. And not sure when, either.

There have been more serious insurance hassles. A clerical error (by someone other than Kristina) back in January seems to be reverberating through the system, and she is still running into hassles when she tries to get prescriptions filled. She is also getting bills for stuff that her insurance used to cover.

She is really trying to focus on her recovery, but dealing with money and administration is a hassle. She says she’s “a little daunted and overwhelmed,” mainly because she’s alone in dealing with so much of this stuff. She has turned her coffee table into an impromptu office, with stacks of things to taker care of, bills to pay, and notes. I get the impression she’s on the phone a lot.

So I would like to request, as a friend, that her other friends take a few minutes and give her a call. Just think about how you’d fell going through something like this by yourself, and what you would really want: folks to talk to. Just a request, from one friend to another.

One thing you should be aware of, in terms of reaching her, is that email is probably not the way to do it. She has a slow internet connection and is on the phone a lot, so she only checks her email once a week or so. A phone call or visit (call first) is the way to go. Thanks for thinking about it.

You could also toss a little money her way (see the link to the left), and we’re looking into the possibility of a monthly automatic draw from your bank account to her transplant-assistance fund. We’ll let you know if something like that can be set up.

Stay tuned, and thanks a lot for checking in.

Mix of News

Greetings, friends of Kristina! I hope you are all doing well.


Medical Update

Kristina is experiencing a mix of news these days. Medically, things are going pretty well. Her bone marrow aspiration showed “No abnormal myeloblasts, monocyte or maturing myeloid populations identified.” In plain English, that means there was no disease present, which obviously is good.

At the same time, she is back on her IV fluids for a short time because some blood levels were a little off. Basically, what's happening right now is the docs peeling her off her meds, but as you're peeling off the first batch of meds, various things that those meds were taking care of start popping up. This is fairly normal, but it is a fine dance between pulling her off the meds but keeping her body healthy. You don’t want to get off the meds too soon, because the body might not be ready to take over, but you also don't want to wait too long.

Along those lines, her appetite has dropped, she has a weird taste in her mouth, her energy level is very low, her sleep patterns are wacky, and she has to deal with two hours of the IV every day. That's a hassle, because she has to be at home when the IV runs out.


Financial and Personal Update

What's really tough right now is some serious and scary hassles she is having with her health insurance. It's a long story, but basically there are five agencies involved with her insurance, and it appears that one of them made a mistake, causing all of her insurance to be canceled. It has since been re-instated, but not fully or correctly, so she is now dealing, every day, with a maze of phone calls and regulations and who knows what, while incredible bills into the six-figure range start to stack up. She says she's actually afraid to face her mail every day.

She's a little overwhelmed by the amount of stuff to take care of, and by the bills. It may have been a while since most of us thought about all of this, but maybe now's a good time to make a call or a visit, write a check, or somehow express some support. She would love to hear from you, no matter what.