As of this Friday, November 14, it has been one year since Kristina got her transplant stem cells. And at this one-year point, sometimes referred to as her "new first birthday," it's a good time to take stock.
The news is much more good than bad, to be sure, and I know she believes that all of us have helped her a lot, even if all we did was send healing vibes. There are still challenges, but the good news for now is, there is also still Kristina!
She is now officially referred to as "in remission." This means that there is no sign of any disease or leukemia-related symptoms in her body, at all. Obviously, that's good. It's not the same thing as "cured," though. It means there is no disease being detected, and no leukemia symptoms going on right now. In other words, the disease could come back, and there are other things going on, not directly related to the leukemia.
On a related note, the transplant worked so well that she was born with B+ blood type and is now 100% A+, because that's what her donor is. Also, all the DNA in her blood is now his! This means that if she leaves blood behind at a crime scene or something, and analysts gather it for evidence, they will think her donor was there. Freaky, huh?
The thing is, there's this problem of GVH, or Graft Versus Host Disease. Basically, it results from the blood of one person being in the body of another, and the "graft" blood's defense system ironically attacking the "host" systems, thinking they are invaders. Kristina now has chronic GVH, and it crept back this summer. It got quite bad, and is now being treated with a bunch of meds -- and those meds are hassling her.
Her overall health is basically good these days, but she has to take steroids which make her face all puffy, hair grow on her face, make it hard to sleep, and leave her exhausted. She is also on anti-rejection drugs, as well as immune-suppressing drugs. The latter is because she needs the immune system of the donor's blood to calm down and stop attacking her body ... but that, in turn, means that she is vulnerable to bugs out in the world, as well as other people's sickness, and even their vaccines. Let's say you get a yellow fever shot; well, that's a live sample of yellow fever, and in theory, Kristina could get yellow fever from you.
This means she can't go back to work, is restricted on travel, has to watch what she eats, can't soak in hot springs, and so on. So this is a bummer. On the other hand, she is still alive and taking drugs! It's easy for me (and maybe us) to think of this thing as all over, but think about this: You can't travel, you're exhausted all the time, you can't just go wherever you want, and you live alone. That would get frustrating, right? Well, it does. So give her a call sometime, and if you live in Seattle, go see her. I guarantee she'd love to see you and/or hear from you.
Let's all hope thing are even better on her "second birthday."
Wednesday, November 12, 2008
Monday, July 14, 2008
Rest of the Photos Posted
Silly me, I forgot the transplant photos! Here they are -- also linked below.
Thursday, July 10, 2008
Photo Links Added
Check out the links to the left showing some pictures from Kristina's life and various stages of the treatment. From the Himalayas to shopping for wigs!
Thursday, June 19, 2008
Looking for an Update?
If you're wondering how Kristina is doing, here's a suggestion: give her a call!
I might sound like I'm being sarcastic, but think about it: if you were sick, couldn't work, and had to limit your social interactions, you'd probably want to hear from people, right? That's why I called her the other night.
I can tell you this: there's still some medical stuff going on, most of it in her intestines, and some of it is quite unpleasant. There are still concerns about larger issues, and now the possibility of more IV fluids and meds being given. She should be hearing more about that this week.
For more, I really encourage you to get in touch. If you need her number, email me. And speaking of email, she only checks that about once a week, so the phone really is better.
Thanks for checking in! She really appreciates it.
Paul
paul@paulgerald.com
I might sound like I'm being sarcastic, but think about it: if you were sick, couldn't work, and had to limit your social interactions, you'd probably want to hear from people, right? That's why I called her the other night.
I can tell you this: there's still some medical stuff going on, most of it in her intestines, and some of it is quite unpleasant. There are still concerns about larger issues, and now the possibility of more IV fluids and meds being given. She should be hearing more about that this week.
For more, I really encourage you to get in touch. If you need her number, email me. And speaking of email, she only checks that about once a week, so the phone really is better.
Thanks for checking in! She really appreciates it.
Paul
paul@paulgerald.com
Thursday, May 15, 2008
Past Day 180!
I spent 45 minutes on the phone with Kristina tonight, and she sounds pretty darn good. She is excited to have passed Day 180 since the transplant -- amazing, isn't it? -- and she tells me she has an inch and a half of hair now! It's dark brown, and she's having sort of an identity crisis, but as she says, at least she's buying clothes now!
I was sitting on the porch when she called, not taking notes or typing, just watching the bats fly around and enjoying the breeze ... so I forgot a lot of stuff I'm supposed to be saying. And she forgot some stuff she had wanted to tell me. So there are your disclaimers.
One thing she did recently was help a group called The Madhouse Project raise $134,000 for the Seattle Cancer Care Alliance. The Madhouse Project is a group of successful 30something guys in Seattle (they named it for their old college crash pad) who get together once a year to raise money to fight cancer. They have a silent auction and a regular auction, and this year Kristina was asked to speak. She told me she screwed it up royally, but she also said there were a lot of tears, and hey, they raised $134,000! Something must have gone right.
She's been doing some physical therapy with other cancer survivors: walking, yoga, this sort of thing. The main thing is to try to rebuild muscle mass after all the lying around and taking drugs. She still has some GI hassles (bad abdominal pain and needing to stay close to a bathroom) on occasion, and there are still hassles with the insurance company, and of course there's always money concerns ...
But let's not forget that she is alive and cancer-free, 180 days after a transplant. That's amazing and more than wonderful. She's really grateful folks are staying in touch -- and if you aren't, well, you ought to be. Give her a call, for heaven's sake!
I was sitting on the porch when she called, not taking notes or typing, just watching the bats fly around and enjoying the breeze ... so I forgot a lot of stuff I'm supposed to be saying. And she forgot some stuff she had wanted to tell me. So there are your disclaimers.
One thing she did recently was help a group called The Madhouse Project raise $134,000 for the Seattle Cancer Care Alliance. The Madhouse Project is a group of successful 30something guys in Seattle (they named it for their old college crash pad) who get together once a year to raise money to fight cancer. They have a silent auction and a regular auction, and this year Kristina was asked to speak. She told me she screwed it up royally, but she also said there were a lot of tears, and hey, they raised $134,000! Something must have gone right.
She's been doing some physical therapy with other cancer survivors: walking, yoga, this sort of thing. The main thing is to try to rebuild muscle mass after all the lying around and taking drugs. She still has some GI hassles (bad abdominal pain and needing to stay close to a bathroom) on occasion, and there are still hassles with the insurance company, and of course there's always money concerns ...
But let's not forget that she is alive and cancer-free, 180 days after a transplant. That's amazing and more than wonderful. She's really grateful folks are staying in touch -- and if you aren't, well, you ought to be. Give her a call, for heaven's sake!
Tuesday, April 8, 2008
Update for April 8
Hello, folks! So sorry I failed to post an update after telling you that Kristina was going in for an endoscopy.
So the word from that procedure was that she does not have GVH in her digestive system, which is great news. She is still dealing with some fatigue and lack of appetite, but she is scheduled to have her lines pulled (that's the hookup for the old IV input) day after tomorrow.
She got a reminder recently of her fragile state: she was invited to a small afternoon barbecue and found out, at the very last minute, that somebody was bringing a child who had recently been given a live vaccine, which is something Kristina cannot be around. So at the very last minute she found out she couldn't go. This kind of thing is really tough for her, as you can imagine.
Otherwise, she still has to fight with the insurance world on many occasions. She fell through some kind of crack in the bureaucracy and has been getting a lot of bills she shouldn't be getting, and this may be starting to affect her credit rating. She is also trying to look over her mother, who now lives in Seattle.
She continues to express how grateful and amazed she is for all the support she's getting, and she continues to request all those healing vibes be sent her way. A few financial donations (just in time to write them off before April 15!) wouldn't hurt, either!
We're working on getting some more photos on here, and I'm trying to get a video someone shot at the Bone Marrow Bash fundraiser posted on YouTube. So stay tuned.
Otherwise, take a moment on Saturday to contemplate this: that day is Day #150 since the transplant! Amazing how time flies.
Thanks for checking in.
Paul
So the word from that procedure was that she does not have GVH in her digestive system, which is great news. She is still dealing with some fatigue and lack of appetite, but she is scheduled to have her lines pulled (that's the hookup for the old IV input) day after tomorrow.
She got a reminder recently of her fragile state: she was invited to a small afternoon barbecue and found out, at the very last minute, that somebody was bringing a child who had recently been given a live vaccine, which is something Kristina cannot be around. So at the very last minute she found out she couldn't go. This kind of thing is really tough for her, as you can imagine.
Otherwise, she still has to fight with the insurance world on many occasions. She fell through some kind of crack in the bureaucracy and has been getting a lot of bills she shouldn't be getting, and this may be starting to affect her credit rating. She is also trying to look over her mother, who now lives in Seattle.
She continues to express how grateful and amazed she is for all the support she's getting, and she continues to request all those healing vibes be sent her way. A few financial donations (just in time to write them off before April 15!) wouldn't hurt, either!
We're working on getting some more photos on here, and I'm trying to get a video someone shot at the Bone Marrow Bash fundraiser posted on YouTube. So stay tuned.
Otherwise, take a moment on Saturday to contemplate this: that day is Day #150 since the transplant! Amazing how time flies.
Thanks for checking in.
Paul
Thursday, March 20, 2008
Back to the Doctor
Hi, folks!
Happy spring to you all, and thanks for checking in here. Kristina really appreciates it and loves hearing from folks (hint, hint).
So her recent troubles with a loss of appetite -- and therefore an overall loss of weight and energy -- have continued to the point that she's scheduled to see a doctor on Monday the 24th. They're going to do an endoscopic procedure, which basically means sticking a camera down her throat to see what's up. She has to get knocked out for this to happen.
What she's hoping they won't find is Graft Versus Host Disease, which is a fairly common reaction to a transplant. What GVH amounts to is the immune system of the transplanted cells attacking her body, thinking it's an invader. A backwards distortion of a healthy system, and one than can cause a lot of problems.
If her current troubles are GVH, then it's back onto the steroids, which she would not be happy about. Steroids (specifically prednizone) make her anxious, mess with her vision, make her urinate a lot more than usual, and make her gain weight. Not fun.
So what we're hoping is that she's just dealing with some stress (the insurance problem is still around) rather than something chronic that will require medication. So it's positive-vibe time again!
Meanwhile, she's only seeing her doctor once a week, in addition to a support group for post-transplant patients, so in that sense she is progressing. She just needs to get this ... whatever it is ... straightened out so she can get back to eating and move towards a more normal life.
Thanks again for checking in, and for gosh sakes, give her a call!
Monday, March 10, 2008
Little Appetite, Low energy
Considering what Kristina was dealing with a while back, not having an appetite and therefore being kind of tired all the time doesn't seem that bad. In that sense, the news is good.
But not eating and not having energy is kind of a problem -- especially when last week she went through a spell of diarrhea that caused her to lose six pounds in nine days.
In other news, the confusion over the insurance seems to have been settled -- a huge relief -- but the question of how to pay the latest bill remains. Money is an eternal issue in her life, it seems.
Medically, her magnesium levels are back on the rise, and her doctor thinks she might "get her line pulled" within the next couple of weeks. That means removing the thing they put in her chest to accept the IV drip. She'd love to get that removed and not have to do the IV thing anymore!
For a little more information about the stage she's in -- past Day 100 -- check out this page from the National Marrow Donor Program.
And that seems to be it for now. Thanks for checking in. She and I talked about maybe trying to post something every week, even if there isn't much to say. We'll try to do that.
But not eating and not having energy is kind of a problem -- especially when last week she went through a spell of diarrhea that caused her to lose six pounds in nine days.
In other news, the confusion over the insurance seems to have been settled -- a huge relief -- but the question of how to pay the latest bill remains. Money is an eternal issue in her life, it seems.
Medically, her magnesium levels are back on the rise, and her doctor thinks she might "get her line pulled" within the next couple of weeks. That means removing the thing they put in her chest to accept the IV drip. She'd love to get that removed and not have to do the IV thing anymore!
For a little more information about the stage she's in -- past Day 100 -- check out this page from the National Marrow Donor Program.
And that seems to be it for now. Thanks for checking in. She and I talked about maybe trying to post something every week, even if there isn't much to say. We'll try to do that.
Friday, February 22, 2008
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.
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.
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.
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…
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