For those of you who have visited here before, I welcome you back. It's been a while. For those of you who have just tuned-in, Welcome - please take a peek, you'll get the gist of it. This is the 1st new posting in quite some time, so please bare with me as I get into the swing of it, polish the place up a bit.
Briefly: Following a harrowing Bone Marrow/Stem Cell Transplant for an aggressive form of Myelodysplasia (MDS) transitioning into full-blown AML Leukemia in Nov 2007, I have recently been given the opportunity to join an incredible group to summit Mt Adams @ 12,267 ft in Washington State with an organization I belong to: Team Survivor Northwest. Mt Adams, a dormant Volcano, is the 3rd largest peak in the Cascade Mountain Range, which runs the length of the Pacific Crest from Baja, to Northern British Columbia, Canada. For a minority of some, this may seem like a day-hike. However for the team I am now a proud member of this will indeed be the Second challenge of our lives. However.....this particular challenge will be in Celebration of Life ! This monumental task holds a extraordinary significance...each of our team members are cancer survivors like myself - all in various stages of treatment, & recovery.
As I give little glimpse's into background information, I will also be posting segments when I can, updating you to our progress during our 6 month training (which has already begun). In addition to our training, each TSNW team member has committed to raise a minimum of $2000 to ensure that the Team Survivor programs - which have been so utterly crucial to my own survival - continue to nurture, cultivate & re-shape post-cancer survivorship with physical therapy, and actively challenging our bodies. Soooo truly instrumental in Recovery ! Please consider donating - at left - to support our Celebration of Life climb....and TSNW.
Last evening I sent out a mass group e-mail to all those that supported me during my darkest, most surreal days. Now I shout out to you all as the saga continues, however this time with a courageous attempt and in a triumphant tone (also known as Tenacity). So please, stay tuned.....
Tuesday, March 30, 2010
Wednesday, November 12, 2008
Transplant + One Year!
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."
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."
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
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