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.
Friday, February 22, 2008
Monday, February 11, 2008
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.
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.
Wednesday, January 30, 2008
A Little Perspective
Hi, folks. First of all, something to look forward to: on or about Day 80 after the transplant, patients get another bone marrow aspiration and biopsy to check for the disease. For Kristina, that will happen on Feb 4th, which is actually Day 82 for her. Hopefully, that will re-affirm the generally good news that has been coming along lately.
Meanwhile, here's a little perspective for us: the image below is a document from the insurance company showing part of the expenses for the transplant!
Sunday, January 27, 2008
A Couple of Needs -- Can You Help?
Kristina informs me of two ways in which volunteers can make a huge difference for her.
One is somebody to help her out with taxes. There's a lot to deal with, especially around medical deductions, so please get in touch if you can help.
The other is some help around the house over the weekends. This is a lot less involved than previous calls for caregivers; now we're talking about only a couple hours' worth of cleaning and maybe some food prep. Think of it as a visit that's a more little helpful than usual!
Please leave a comment or shoot an email if you can pitch in on these.
Thanks!
Saturday, January 26, 2008
Snowing in Seattle ... and Other News
When I called Kristina today, the big news was it was snowing in Seattle. For you folks outside the Pacific Northwest, this really is news. Usually our moisture falls as water – for six months, sure, but almost never as snow.
Anyway, most of the Kristina-related news is good. Her recovery is going quite well: she’s now off the prednisone steroid, her daily IVs, and the insulin, as well as some drug called flucomazole. That last one is an anti-fungal, she thinks. Understand, she still takes about 50 pills a day (14 different drugs and three “mega-vitamins”), so at some point it gets hard to track what each one does.
The steroid left her with “chipmunk cheeks” and a few pounds put back on, but she’s still below the weight she was at when all this started. She’s doing physical therapy daily – she walks for half an hour and can lift four pounds – and she’s getting hair again ... well, peach fuzz, but it’s darker than what she had before. She never did lose her eyebrows or eyelashes. She’s thinking of getting a brown wig. She said this is the time to try out different looks!
The biggest news of this past week was that a clerical glitch someplace caused all of her health insurance to be briefly cancelled! That got cleared up quickly, but it was spooky.
Okay, there’s other stuff to share, but typing with one arm is a hassle, and besides, we like to keep you coming back!
Anyway, most of the Kristina-related news is good. Her recovery is going quite well: she’s now off the prednisone steroid, her daily IVs, and the insulin, as well as some drug called flucomazole. That last one is an anti-fungal, she thinks. Understand, she still takes about 50 pills a day (14 different drugs and three “mega-vitamins”), so at some point it gets hard to track what each one does.
The steroid left her with “chipmunk cheeks” and a few pounds put back on, but she’s still below the weight she was at when all this started. She’s doing physical therapy daily – she walks for half an hour and can lift four pounds – and she’s getting hair again ... well, peach fuzz, but it’s darker than what she had before. She never did lose her eyebrows or eyelashes. She’s thinking of getting a brown wig. She said this is the time to try out different looks!
The biggest news of this past week was that a clerical glitch someplace caused all of her health insurance to be briefly cancelled! That got cleared up quickly, but it was spooky.
Okay, there’s other stuff to share, but typing with one arm is a hassle, and besides, we like to keep you coming back!
Wednesday, January 16, 2008
Quick Update
Hi folks. Paul here, with apologies for so few posts. First there were the holidays, then I broke my arm skiing! I am typing this one-handed, and Kristina and I were laughing about both of now being invalids. The advantage I have is that my caregiver is also my girlfriend.
Kristina is doing pretty darn well. She’s off the IV and insulin and is being weaned off the steroids. She is still dealing with GVH on her skin, which necessitates taking expensive pills and then getting into a tanning booth at the hospital. She has had some caregiver issues; one was sick and had to be sent home, and I think she’s on a whole new one now. She still needs someone there several days a week, so there are still bills to pay.
There are some improved videos posted to the left – thanks to Jaqueline Martinez for doing that! Included in there is the report from the night of the fundraiser at Tractor Tavern.
So the news is mostly good, but from what I hear, things can go south pretty quick. So let’s all remember that our friend is still dealing with some serious stuff and keep sending those healthy, healing vibes.
Meanwhile, I’ll try to post more often, as well.
Kristina is doing pretty darn well. She’s off the IV and insulin and is being weaned off the steroids. She is still dealing with GVH on her skin, which necessitates taking expensive pills and then getting into a tanning booth at the hospital. She has had some caregiver issues; one was sick and had to be sent home, and I think she’s on a whole new one now. She still needs someone there several days a week, so there are still bills to pay.
There are some improved videos posted to the left – thanks to Jaqueline Martinez for doing that! Included in there is the report from the night of the fundraiser at Tractor Tavern.
So the news is mostly good, but from what I hear, things can go south pretty quick. So let’s all remember that our friend is still dealing with some serious stuff and keep sending those healthy, healing vibes.
Meanwhile, I’ll try to post more often, as well.
Monday, January 7, 2008
A little about Graft-Versus-Host Disease
Hi, folks!
Friday's post was from Kristina directly -- a new trend, since she is at home and can access the Internet herself. I was traveling and doing the family/holiday thing, but I'm back now.
Kristina asked me to post a link to more information about Graft-Versus-Host Disease (GVH), which is the main thing she's dealing with right now. Hers is mostly on the skin, and the treatment involves taking three pills (a $500-per-week prescription!) and then, an hour and a half later, getting under a tanning bed for exactly 21 seconds.
Anyway, she asked for a link to info about GVH, so here it is.
Subscribe to:
Posts (Atom)