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!
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.
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.
Friday, January 4, 2008
Day 50: a New Year, and taking stock....
A New Year calls for taking stock of everything so far:
~ 1 Bone Marrow/Stem Cell Transplant (Nov 14th)
~ 2 Chemotherapies (Aug/Sept, and then again during Transplant)
~ 6 Bone Marrow Aspiration’s & Biopsies (Day 80 still yet to come…..)
~ No Evidence of Disease noted !!!! (….as of Day 28 )
~ 1 surgically implanted Hickman Catheter extending out the upper chest (Aug 17th)
~ 1 bag of 1000 ml IV hydration w/ medications a day (4.5 hrs)
~ 42 pills a day (!!!!!)
~ Beclomethasone (to fight upper GI Graph vs. Host disease)
~ 1-2 Insulin injections a day (temporary Diabetic due to the 4 steroids)
~ 7 more PRN (as needed) meds
~ 2 types of GvH Disease (upper GI, skin - new)
~ 2 ointments/lotions (to fight skin GvH)
~ Day 50……and proceeding with Great progress !!
~ 4th week out of Hospital
~ ½ way to Day 100 !!! (leave daily Fred Hutch care & return to daily
Virginia Mason Medical care)
~ 3 PUVA treatments a week (to fight skin GvH) (plus 3 more pills/day)
~ Physical Therapy (due to muscle-mass loss from steroids)
~ The beginnings of “Moon Face”, or chipmunk cheeks (a result of the steroids)
~ 1 VERY shinny, bald head
~ 2nd primary caregiver
~ A crew of uber-Wonderful, weekend-warrior volunteer caregivers
~ A network of utterly amazing friends & co-workers
~ Numerous Unknown & Gracious Guardian Angles…..
~ ….much to be Thankful…and Hopeful of…
~ 1 Bone Marrow/Stem Cell Transplant (Nov 14th)
~ 2 Chemotherapies (Aug/Sept, and then again during Transplant)
~ 6 Bone Marrow Aspiration’s & Biopsies (Day 80 still yet to come…..)
~ No Evidence of Disease noted !!!! (….as of Day 28 )
~ 1 surgically implanted Hickman Catheter extending out the upper chest (Aug 17th)
~ 1 bag of 1000 ml IV hydration w/ medications a day (4.5 hrs)
~ 42 pills a day (!!!!!)
~ Beclomethasone (to fight upper GI Graph vs. Host disease)
~ 1-2 Insulin injections a day (temporary Diabetic due to the 4 steroids)
~ 7 more PRN (as needed) meds
~ 2 types of GvH Disease (upper GI, skin - new)
~ 2 ointments/lotions (to fight skin GvH)
~ Day 50……and proceeding with Great progress !!
~ 4th week out of Hospital
~ ½ way to Day 100 !!! (leave daily Fred Hutch care & return to daily
Virginia Mason Medical care)
~ 3 PUVA treatments a week (to fight skin GvH) (plus 3 more pills/day)
~ Physical Therapy (due to muscle-mass loss from steroids)
~ The beginnings of “Moon Face”, or chipmunk cheeks (a result of the steroids)
~ 1 VERY shinny, bald head
~ 2nd primary caregiver
~ A crew of uber-Wonderful, weekend-warrior volunteer caregivers
~ A network of utterly amazing friends & co-workers
~ Numerous Unknown & Gracious Guardian Angles…..
~ ….much to be Thankful…and Hopeful of…
Saturday, December 22, 2007
What Kristina Said at the Fundraiser
Well, this is what she meant to say. It was quite a thing for her to even get up on that stage, she snuck in and out of there in a flash (and in lots of protective clothing), and she forgot some of this. So I asked her to send it to me, and here it is. As she said, "Simply reading the below it doesn't do justice to what I was feeling throbbing thru my heart.....and my soul. Don't know if it will convey that...."
-----
There's a few things I must say. And.....I....have to say them. They simply can't come from anyone else, they need to be in my voice, from me....from MY heart......
Ya know how we always think THIS happens to “OTHER” people….. Well the truth is….it simply doesn't ! It mostly happens to those you least expect it to…..and it’s utterly devastating when it does. After numerous stumbling blocks, I was unbelievably lucky. Fact is, I'm a generic white chick from Northern Europe. I had a number of “possible” Donor’s. What happens if you are ½ Nepalese and ½ Irish ? Or half German & half Nigerian ? You wait…..and you wait, as long as you can, and every year some die….waiting. Even children. Minorities especially exist in a precarious danger zone. Please donate blood, but please go one step further and do the simple cheek swab…..and maybe save someone’s life. PLEASE.
The Research, Knowledge and Care that go into every aspect of a Bone Marrow/Stem Cell Transplant is awesome thing. Not that long ago, I truly would have been a girl in a bubble. Please…..everyone in the room acknowledge what the people from UW Med Center, Fred Hutch & Seattle Cancer Care Alliance do for a living….because they truly are intragal (sp???) parts of miracles on an every day basis. Cheers to them !
I’m not here for me….. I’m truly here for all of you…to Thank You and Honor you. My friends… and those that I don’t even know… that out of the greatness of their hearts, were involved in anything having to do with helping me. It truly does take a Village…..and you have all built my Universe......... For this I truly honor all of you.
From the beginning…not all of you even knew each other : from far different walks of life, as well as dramatically different parts of MY life. My greatest joy has been witnessing the meetings of voices & e-mail addresses, all for the very first time….. and the now the connections that have been forged.
For those that don’t know me, I hope the sheen from my scalp is not blinding you. All of these bands, all of the musicians, are amazingly gentle and kind souls…..as well as phenomenally talented. They themselves are well worth the evening of entertainment without being graciously attached to my name….. I thank them for choosing to take part in this event. Please enjoy the music…and the collective talent !
Namaskar.
-----
There's a few things I must say. And.....I....have to say them. They simply can't come from anyone else, they need to be in my voice, from me....from MY heart......
Ya know how we always think THIS happens to “OTHER” people….. Well the truth is….it simply doesn't ! It mostly happens to those you least expect it to…..and it’s utterly devastating when it does. After numerous stumbling blocks, I was unbelievably lucky. Fact is, I'm a generic white chick from Northern Europe. I had a number of “possible” Donor’s. What happens if you are ½ Nepalese and ½ Irish ? Or half German & half Nigerian ? You wait…..and you wait, as long as you can, and every year some die….waiting. Even children. Minorities especially exist in a precarious danger zone. Please donate blood, but please go one step further and do the simple cheek swab…..and maybe save someone’s life. PLEASE.
The Research, Knowledge and Care that go into every aspect of a Bone Marrow/Stem Cell Transplant is awesome thing. Not that long ago, I truly would have been a girl in a bubble. Please…..everyone in the room acknowledge what the people from UW Med Center, Fred Hutch & Seattle Cancer Care Alliance do for a living….because they truly are intragal (sp???) parts of miracles on an every day basis. Cheers to them !
I’m not here for me….. I’m truly here for all of you…to Thank You and Honor you. My friends… and those that I don’t even know… that out of the greatness of their hearts, were involved in anything having to do with helping me. It truly does take a Village…..and you have all built my Universe......... For this I truly honor all of you.
From the beginning…not all of you even knew each other : from far different walks of life, as well as dramatically different parts of MY life. My greatest joy has been witnessing the meetings of voices & e-mail addresses, all for the very first time….. and the now the connections that have been forged.
For those that don’t know me, I hope the sheen from my scalp is not blinding you. All of these bands, all of the musicians, are amazingly gentle and kind souls…..as well as phenomenally talented. They themselves are well worth the evening of entertainment without being graciously attached to my name….. I thank them for choosing to take part in this event. Please enjoy the music…and the collective talent !
Namaskar.
Subscribe to:
Posts (Atom)