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.
Saturday, December 22, 2007
Kristina on KOMO TV in September
Finally got this report loaded on YouTube -- and now we're working on the one from the fundraiser (see next post below).
Thursday, December 20, 2007
Thank Your for a Real Good Time!
There are too many people to thank for the fundraiser last night in Seattle: the folks who put it all together, the bands, the Tractor Tavern, everybody who came ... It was a great night all around, and my guess is that about 100 people came through the doors, maybe more.
Thank you everybody! And if you couldn't make it, why not swing by the donation link right now to give the $20 you would have spent to get in, had you been there?
Kristina even made a brief appearance, and I'll try to get her remarks from her. She had written some stuff but didn't get through all of it. It was a pretty big undertaking just being there.
If anybody has photos they can share, please let me know. Maybe you could post them on a site and send me the link!
In site news, I have updated a couple of links. One is that I have changed the "Days 0-30" link with the "Days 30-100" link, which is called "Early Recovery." I am also working on posting a recent story that KOMO did, but I did get the Seattle PI story from last week up there. I know a few people read that and showed up at the Tractor Tavern Wednesday night, so another round of thanks to them!
On a personal note, I really enjoyed meeting as many people as I did. I'm not much a late-night partier any more, but last night was a pretty magical time.
Thank you everybody! And if you couldn't make it, why not swing by the donation link right now to give the $20 you would have spent to get in, had you been there?
Kristina even made a brief appearance, and I'll try to get her remarks from her. She had written some stuff but didn't get through all of it. It was a pretty big undertaking just being there.
If anybody has photos they can share, please let me know. Maybe you could post them on a site and send me the link!
In site news, I have updated a couple of links. One is that I have changed the "Days 0-30" link with the "Days 30-100" link, which is called "Early Recovery." I am also working on posting a recent story that KOMO did, but I did get the Seattle PI story from last week up there. I know a few people read that and showed up at the Tractor Tavern Wednesday night, so another round of thanks to them!
On a personal note, I really enjoyed meeting as many people as I did. I'm not much a late-night partier any more, but last night was a pretty magical time.
Sunday, December 16, 2007
Read about Kristina in the Seattle Paper
The Seattle P-I has done another story about Kristina, dated Dec. 14. Read it here.
Friday, December 14, 2007
Preliminary News is Good
We're still waiting for confirmation when another test comes in (hopefully this afternoon), but the preliminary results from Kristina's bone marrow biopsy read in part, "No abnormal myleoblasts noted."
Again, that's very preliminary, so stay tuned. There's another test to come which will confirm or clarify, and as soon as we have those results, we'll get them out.
Again, that's very preliminary, so stay tuned. There's another test to come which will confirm or clarify, and as soon as we have those results, we'll get them out.
Tuesday, December 11, 2007
Big Day Today
Okay, folks – it’s time to send big, positive, healing energy. It’s Bone Marrow Biopsy Day.
What is a biopsy? Well, today is the day they will put Kristina under and take a sample from her bone marrow. The purpose is quite simple: to find out if, and how well, the bone marrow transplant worked. It will take a few days, maybe a week, to get all the official results, but there are three basic outcomes:
Best: If there are no “blasts,” that means she’s cured – although the cancer could come back, and on top of that, future forms of cancer are a little more likely due to all the chemo she got. Basically, under this scenario, she continues to recover from all the treatments and keeps an eye out for GVH.
Semi-bad outcome: a few blasts would mean she’s in clinical remission and will still need ongoing maintenance from drugs or chemo.
The worst outcome is a lot of blasts, perhaps even signs that she’s gone all the way to full-blown leukemia, which would require another transplant in the next couple of months.
For updates, like I said, it may be a few days. Also, I will be out of town and away from the Internet until Friday morning. There’s a chance Kristina will log on herself and post something, but she’s trying to figure out how to take things easier.
Speaking of which, she sounds like she’s slowly getting to feel a little better. She had two great caregivers over the weekend, and that went well. She is still a little shaky, gets tired easily, and is being told to take it easier, so she’ll work on that. Her weight and temperature are stable, and her appetite is slowly coming back.
The bummer at this point is that the steroids she is on have altered her blood in such a way as to necessitate insulin shots. She’s quite frustrated by this development, but there is a good chance it’s a temporary situation that will pass when the steroids she’s taking (and the GVH they are fighting) pass.
She continues to tell me that she has run out of words to thank everyone. I encouraged her to log on here directly sometime and post a letter of thanks to all of you.
Meanwhile, there probably won’t be any news here for a few days, so please say a prayer and/or send some energy for the biopsy today.
What is a biopsy? Well, today is the day they will put Kristina under and take a sample from her bone marrow. The purpose is quite simple: to find out if, and how well, the bone marrow transplant worked. It will take a few days, maybe a week, to get all the official results, but there are three basic outcomes:
Best: If there are no “blasts,” that means she’s cured – although the cancer could come back, and on top of that, future forms of cancer are a little more likely due to all the chemo she got. Basically, under this scenario, she continues to recover from all the treatments and keeps an eye out for GVH.
Semi-bad outcome: a few blasts would mean she’s in clinical remission and will still need ongoing maintenance from drugs or chemo.
The worst outcome is a lot of blasts, perhaps even signs that she’s gone all the way to full-blown leukemia, which would require another transplant in the next couple of months.
For updates, like I said, it may be a few days. Also, I will be out of town and away from the Internet until Friday morning. There’s a chance Kristina will log on herself and post something, but she’s trying to figure out how to take things easier.
Speaking of which, she sounds like she’s slowly getting to feel a little better. She had two great caregivers over the weekend, and that went well. She is still a little shaky, gets tired easily, and is being told to take it easier, so she’ll work on that. Her weight and temperature are stable, and her appetite is slowly coming back.
The bummer at this point is that the steroids she is on have altered her blood in such a way as to necessitate insulin shots. She’s quite frustrated by this development, but there is a good chance it’s a temporary situation that will pass when the steroids she’s taking (and the GVH they are fighting) pass.
She continues to tell me that she has run out of words to thank everyone. I encouraged her to log on here directly sometime and post a letter of thanks to all of you.
Meanwhile, there probably won’t be any news here for a few days, so please say a prayer and/or send some energy for the biopsy today.
Saturday, December 8, 2007
We Need Some Help Here!
Hi, folks. We’ll get to the Kristina Update in a second, but right now there is a pressing need: weekend caregivers.
I just spoke to the first non-medical person who volunteered for duty, and she assures me it’s no big deal. You show up at 9 p.m. on Friday or Saturday and stay with Kristina for 24 hours, but you’re not at all stuck in the apartment. She is somewhat mobile.
The food, the medications, everything is all laid out for you and very straightforward. Of course, Kristina is very well-informed and knows exactly what to do. Basically, you make sure she gets her meds three times a day (all pills plus one oil that she puts in her mouth), you check her glucose level once a day (no needles, just a tiny pin prick on her finger), you do laundry, and you follow simple instructions for food handling.
In short, it’s nothing mysterious, nothing scary or threatening – but it is something that is desperately needed. There is a weekend this month that is not covered, and several days in January, as well. Please consider taking this opportunity to help!
Consult this calendar to find available dates, and then contact Kristina at her home. If you don’t have her number or email address, email me (paul@paulgerald.com) and I will forward it along. As of this posting, we need people for Dec. 29 and 30 and Jan. 12, 19, 20, 26 and 27.
Kristina is home and doing pretty well, all things considered. It’s been a whirlwind couple of days transitioning from hospital to home, and she’s pretty worn out. She said Thursday and Friday were “kind of a nosebleed” with all the stuff that had to be taken care of.
She’s having a harder time than she anticipated, mainly with getting around and stuff like standing up from a seated or kneeled-over position. Her eyesight has also been affected, and she has the occasional bout of nausea. She’s a little shaky and says she can’t read her own handwriting.
Still, the blood numbers are good, and the GVH is not too bad. Her biggest complaint seems to be that one of the meds she’s taking – a steroid which is in oil form and has to be sort of sprayed into her mouth – apparently makes everything she eats or drinks taste like the medication. Perhaps related to this, her appetite isn’t much, but last night she had her first real full-night’s sleep she can remember.
Don’t forget the fundraiser on Dec. 19 – invite friends, tell everyone you know, post the flyer in various places, and so on.
Also, please go visit Kristina – unless you’re sick, in which case stay away. When I talked to her today, I could hear in the background people meeting each other for the first time, after heard about each other through all of this. I can’t wait to meet a bunch of you when I come up from Portland on the 19th!
I just spoke to the first non-medical person who volunteered for duty, and she assures me it’s no big deal. You show up at 9 p.m. on Friday or Saturday and stay with Kristina for 24 hours, but you’re not at all stuck in the apartment. She is somewhat mobile.
The food, the medications, everything is all laid out for you and very straightforward. Of course, Kristina is very well-informed and knows exactly what to do. Basically, you make sure she gets her meds three times a day (all pills plus one oil that she puts in her mouth), you check her glucose level once a day (no needles, just a tiny pin prick on her finger), you do laundry, and you follow simple instructions for food handling.
In short, it’s nothing mysterious, nothing scary or threatening – but it is something that is desperately needed. There is a weekend this month that is not covered, and several days in January, as well. Please consider taking this opportunity to help!
Consult this calendar to find available dates, and then contact Kristina at her home. If you don’t have her number or email address, email me (paul@paulgerald.com) and I will forward it along. As of this posting, we need people for Dec. 29 and 30 and Jan. 12, 19, 20, 26 and 27.
Kristina is home and doing pretty well, all things considered. It’s been a whirlwind couple of days transitioning from hospital to home, and she’s pretty worn out. She said Thursday and Friday were “kind of a nosebleed” with all the stuff that had to be taken care of.
She’s having a harder time than she anticipated, mainly with getting around and stuff like standing up from a seated or kneeled-over position. Her eyesight has also been affected, and she has the occasional bout of nausea. She’s a little shaky and says she can’t read her own handwriting.
Still, the blood numbers are good, and the GVH is not too bad. Her biggest complaint seems to be that one of the meds she’s taking – a steroid which is in oil form and has to be sort of sprayed into her mouth – apparently makes everything she eats or drinks taste like the medication. Perhaps related to this, her appetite isn’t much, but last night she had her first real full-night’s sleep she can remember.
Don’t forget the fundraiser on Dec. 19 – invite friends, tell everyone you know, post the flyer in various places, and so on.
Also, please go visit Kristina – unless you’re sick, in which case stay away. When I talked to her today, I could hear in the background people meeting each other for the first time, after heard about each other through all of this. I can’t wait to meet a bunch of you when I come up from Portland on the 19th!
Wednesday, December 5, 2007
December 5: Headed Home Today
When I called Kristina just now, she was within hours of going home, but still feeling a little overwhelmed.
For example, she was looking at 19 pills she had to take! She was also waiting for a transition nurse to come, waiting for meds to be delivered, hassling around with her long-term care insurance company, trying to get paperwork from doctors, and so on -- all the complexity of going home, which is where she will be by the end of the day.
Even when she's at home, she's looking at a pretty restricted lifestyle. She can leave the house for brief periods, but she can't drive. She can go back to eating, but with severe restrictions, and she can't have alcohol. She can have visitors, but she'll probably wear out pretty quickly, and she can't have too much activity.
What is needed right now is volunteer help: to serve as caregivers on weekends and to put up flyers for the Dec. 19 fundraiser. Those are the biggest needs for now.
Anyway, she is headed home, and if you want to visit there, please call ahead to make sure she's there and can handle a visit.
Hooray!
For example, she was looking at 19 pills she had to take! She was also waiting for a transition nurse to come, waiting for meds to be delivered, hassling around with her long-term care insurance company, trying to get paperwork from doctors, and so on -- all the complexity of going home, which is where she will be by the end of the day.
Even when she's at home, she's looking at a pretty restricted lifestyle. She can leave the house for brief periods, but she can't drive. She can go back to eating, but with severe restrictions, and she can't have alcohol. She can have visitors, but she'll probably wear out pretty quickly, and she can't have too much activity.
What is needed right now is volunteer help: to serve as caregivers on weekends and to put up flyers for the Dec. 19 fundraiser. Those are the biggest needs for now.
Anyway, she is headed home, and if you want to visit there, please call ahead to make sure she's there and can handle a visit.
Hooray!
Tuesday, December 4, 2007
December 4: Going Home Tomorrow!
It’s been a crazy day for Kristina, but for good reasons. She is officially in transition to go home on Wednesday, December 5.
Doctors, nutritionists, her caretaker, friends – all have come through at some point today. She said she expected to be a little stressed out by this, but in fact she said, “I can’t wait to get the hell out if here! I will miss a couple of my favorite nurses, but I can’t wait to veg out on the couch, watch movies and order pizza.”
While she won’t be as restricted in her lifestyle as she originally thought (she will, for example, be able to go for slow walks around the neighborhood, and she’ll be able to have visitors), she will still be mostly isolated, and she isn't able to drive for months.
Meanwhile, she thinks she will be on about 22 medications, some of them several times a day! She will also have daily appointments at Fred Hutchinson Cancer Research Center. So if you want to visit, call to make sure she’s there.
Again, the next big thing to aim for (and pray about) is a Dec. 11 biopsy to see how well this whole transplant thing worked. That’s the thing she wants people send tons and tons of positive energy towards.
Also, please consider taking a one-day weekend shift as her caregiver. She says there is a weekend available right before New Year’s, and a few available in January.
Doctors, nutritionists, her caretaker, friends – all have come through at some point today. She said she expected to be a little stressed out by this, but in fact she said, “I can’t wait to get the hell out if here! I will miss a couple of my favorite nurses, but I can’t wait to veg out on the couch, watch movies and order pizza.”
While she won’t be as restricted in her lifestyle as she originally thought (she will, for example, be able to go for slow walks around the neighborhood, and she’ll be able to have visitors), she will still be mostly isolated, and she isn't able to drive for months.
Meanwhile, she thinks she will be on about 22 medications, some of them several times a day! She will also have daily appointments at Fred Hutchinson Cancer Research Center. So if you want to visit, call to make sure she’s there.
Again, the next big thing to aim for (and pray about) is a Dec. 11 biopsy to see how well this whole transplant thing worked. That’s the thing she wants people send tons and tons of positive energy towards.
Also, please consider taking a one-day weekend shift as her caregiver. She says there is a weekend available right before New Year’s, and a few available in January.
Monday, December 3, 2007
Dec. 3: Going Home Soon!
Great news: Kristina expects to go home Tuesday or Wednesday. That doesn’t mean that all is well, but it does mean that she gets to continue her recovery and treatment from her own apartment, which she is very excited about.
I think the upcoming transition is bringing some other things into focus for her: the need for money, logistical issues with the caregiver, the need for weekend caregiving volunteers, and so on. There’s also the added element that, due to her taking three steroids to combat GVH, she is now diabetic and needs insulin.
So she is by no means out of the woods, but at least she will soon be out of the hospital. There will be daily visits to the hospital for monitoring and treatment for several months – and she’ll be taking about 15 medications daily! – but she will be home.
The next big thing is a bone marrow biopsy in about nine days. Today is Day 19 since transplant, and on Day 28 she will have a biopsy (tissue sampling) from her bone marrow to see if the MDS has been eradicated. If it has been, then the disease is gone and she recovers from all this and gets on with her life. If it hasn’t been, there will be more chemo and another transplant.
Otherwise:
I think the upcoming transition is bringing some other things into focus for her: the need for money, logistical issues with the caregiver, the need for weekend caregiving volunteers, and so on. There’s also the added element that, due to her taking three steroids to combat GVH, she is now diabetic and needs insulin.
So she is by no means out of the woods, but at least she will soon be out of the hospital. There will be daily visits to the hospital for monitoring and treatment for several months – and she’ll be taking about 15 medications daily! – but she will be home.
The next big thing is a bone marrow biopsy in about nine days. Today is Day 19 since transplant, and on Day 28 she will have a biopsy (tissue sampling) from her bone marrow to see if the MDS has been eradicated. If it has been, then the disease is gone and she recovers from all this and gets on with her life. If it hasn’t been, there will be more chemo and another transplant.
Otherwise:
- Blood numbers are all up again, and some are back within normal
- I posted some links to media clips about her under a new category, personal information. It's on the left.
- I sent out an EVite to about 100 more people for the Dec. 19 fundraiser. The flyer on this page is all the info you need on that.
- Please consider volunteering for a 24-hour weekend shift as a caregiver. Email Kristin for more info.
- For visiting her at her apartment, all the same restrictions still apply, and during the day she may well be at the hospital. So call her in advance to make sure she’s there – but she would LOVE to have visitors, and of course it’s a lot easier than the hospital.
- Please consider making a small donation to her fund. There are many, many bills to pay.
Sunday, December 2, 2007
Dec. 2 -- Hoping to go Home Soon
Another mix of good news and bad news today.
Kristina isn’t going home tomorrow, as hoped – but she might go home as early as Wednesday.
Good news: blood numbers are all still going up, and some are back within the normal range. Bad news: she officially has Graft Versus Host Disease (GVHD), which has been a fear all along – but it’s apparently a mild case, and they caught it early. So that’s good. It’s in her gut (it could also be in the skin, liver, kidneys, etc.), and they found it Friday after taking biopsies of her esophagus, stomach and intestine.
The treatment for GVHD is three different steroids, which she was hoping to avoid for all their various side effects. As an example of her new reality, steroids raise her blood glucose level, so now she has to take insulin like a diabetic.
The other thing about having GVHD is that she’s nauseous all the time and has almost no appetite, and she generally feels raw and dried out. She also thinks she has a head cold, and last night she has restless leg syndrome and couldn’t sleep – another side effect of steroids.
Even with all this, her doctor assures her she’s doing quite well. It’s just frustrating for her because it had been going really well, and also because she just really, really wants to go home.
Meanwhile, the Christmas boat parade is happening in Seattle this evening. Again, bad news is she can’t participate, good news is she has a great view of it from her room.
She keeps telling me to thank everyone for all of your support. She’s also looking for anyone with a digital video camera, for a couple of reasons. One is to record a segment that KOMO TV did on her so we can post it on the site; the other is that she’s hoping to be able to somehow watch the Dec. 19 fundraiser from her home via the Internet.
And finally, if you have ideas for another fundraiser (raffle, silent auction, whatever), let us know.
Please post comments below if you have a camera or just want to send some good wishes. She reads them all.
Kristina isn’t going home tomorrow, as hoped – but she might go home as early as Wednesday.
Good news: blood numbers are all still going up, and some are back within the normal range. Bad news: she officially has Graft Versus Host Disease (GVHD), which has been a fear all along – but it’s apparently a mild case, and they caught it early. So that’s good. It’s in her gut (it could also be in the skin, liver, kidneys, etc.), and they found it Friday after taking biopsies of her esophagus, stomach and intestine.
The treatment for GVHD is three different steroids, which she was hoping to avoid for all their various side effects. As an example of her new reality, steroids raise her blood glucose level, so now she has to take insulin like a diabetic.
The other thing about having GVHD is that she’s nauseous all the time and has almost no appetite, and she generally feels raw and dried out. She also thinks she has a head cold, and last night she has restless leg syndrome and couldn’t sleep – another side effect of steroids.
Even with all this, her doctor assures her she’s doing quite well. It’s just frustrating for her because it had been going really well, and also because she just really, really wants to go home.
Meanwhile, the Christmas boat parade is happening in Seattle this evening. Again, bad news is she can’t participate, good news is she has a great view of it from her room.
She keeps telling me to thank everyone for all of your support. She’s also looking for anyone with a digital video camera, for a couple of reasons. One is to record a segment that KOMO TV did on her so we can post it on the site; the other is that she’s hoping to be able to somehow watch the Dec. 19 fundraiser from her home via the Internet.
And finally, if you have ideas for another fundraiser (raffle, silent auction, whatever), let us know.
Please post comments below if you have a camera or just want to send some good wishes. She reads them all.
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