Sunday, April 20, 2008

Out comes the line!

Yes! It's true, I no longer bionic, and can't mainline anything. I'm SOO excited. Just in time for tank top season. I was pretty nervous getting it removed, since the last time it was AWFUL. But they gave me an ativan to calm me down and 20 relatively pain-free minutes later it was done. Ahhhh. It really frees up my nightly routine not having to flush that thing every night. But, now I have to get poked for blood work. Thankfully I haven't really been poked in such a long time, besides those shots I talked about last time, but they didn't really hurt.

As for the gvh, its kinda like a traveling circus. I have a skin rash that moves around, so I'm constantly rubbing some sort of steroid cream on all my bits and pieces. I'm hoping this is as bad as it gets. I'm completely off the immune suppression, so keep your fingers crossed!

Thursday, March 27, 2008

An update? ! Finally!

Ok, I apologize for not posting in months. I could give you a ton of excuses, but in truth, it's mostly because I've had my mind on things other than my health. Not to say that I'm not keeping healthy, I've just got other things going on and have become more interested in those things than writing about health matters. I think spending so many months obsessed about cancer that I went through a backlash. Also when I stopped blogging I was trying very hard to get back to "normal", which is a whole other blog! Anyway, what you're really wondering is how I'm doing. And the answer is very good, thank you. My results from the 100 day workup were all favorable, they found no leukemic cells and everything is going just dandy. Since then, I have been tapering off my anti-rejection/immune suppression drugs which is great. That drug was really hammering my kidney, for which I had to have IV fluids. But now, I'm on low enough doses that my kidneys are recovered and I'm actually expecting to get my line out soon. Boy will that really make me feel normal!
More recent health news is that they believe that I have chronic graft vs host (GVH), which is good and bad. It's good, since that is a strong indicator that I've also got graft vs leukemia, so my new immune system is taking care of whatever pesky leftover leukemic cells remain. The bad news is that I have the annoyance of dealing with however this GVH decides to manifest itself. There are 3 outcomes: 1) the GVH gets bad enough that they have to put me back on immune suppression and possibly systemic steroids 2) we treat the GVH topically and it goes away, and 3) we treat it topically, it goes away, and it comes back, goes away and comes back, possibly for years to come. I'm going to pick option #2. So far, the GVH is inside my cheeks, they are a bit swollen, though I'm not sure enough to be noticeable, and they feel like I've been chewing on them. I've got a steroidal mouth wash that tastes like cherry Robitussin which I use 3 times a day.
Oh, and the last bit is that a received tetanus and hepatitis B immunizations during my last visit. That was a surprise, I'll take it as a good sign!

Tuesday, November 20, 2007

Day 100 Workup

Today I spent most of the day at the BMT clinic getting the first bit of the 100 day workup. It included quite a few vials of blood (no worries, I still have my line in, so no pain from that), a pulminary function test (PFT) where I blew into a tube measuring my lung capacity and dispersion, and finally a bone marrow aspiration where they drew out some bone marrow. They typically take a bone core biospy, but for some reason they didn't need one, so that made it much easier. They are really good at the clinic and provide plenty of pain medication, so I didn't feel a whole lot. I also did well on the pulminary function test, scoring just about the same as I did before the transplant, though my reaction times were a bit slowed, since they did the bone marrow before the PFT, so I was a little spacey from the morphine. I also came home and slept for like 4 hours, and don't expect to be able to stay up very much longer! But I think this is the only day that would be painful, my other appointments are the eye doctor, dermatologist, and OB. I'll find out the results of all these test the Thursday after thanksgiving. Keep your fingers crossed that everything comes out ok, and that I can start tapering off my drugs!

Back to School!!

I spent my first day at school yesterday (Monday)! It was great, though my new office isn't quite ready, it was fantastic to see everyone. Though it is a bit strange now that Miriah has moved to Boston, but eventually we all have to move on! My day was pretty low-key. I first went in search of my new office, which should be ready by Wednesday. Then found Roni, and we "conferenced" until lunch time, where we conferenced some more over indian food. I then went to Sarah Geneser's Defense, which is of course inspiring me to get done! (Congrats Sarah!!). Then I went back home. I'll be going back on Wednesday to not only claim my office, but also see dear old friends Bruce and Amy Gooch!

Day 100

Well, I made it! Saturday the 17th was day 100, which is our arbitrary milestone, so now they are going to start with the work-up to see how well the transplant went (i.e. how much of my blood is mine vs the donor), if I still have any AML cells, as well as see if there is damage from the radiation and chemo. So, lots of tests, but nothing too terrible. So what did I do to celebrate day 100? Well, my parents stayed the night at their apartment, so I stayed all by myself all night long for the first time in a really really long time. It was very nice, though all I did was grab some takeout and watch SNL. But like I said, it was nice and felt like "normal", that is, like before all of this started, which is very cool.

Thursday, November 1, 2007

Last Day of Vis

Well, it's been really great. My talk went really well, and I got some great feedback. While I missed a lot of talks, opting instead to hang out in my room and stay away from sick people, I have really gotten alot out of the conference. I'd like to say Hi to all my new friends who have been following the blog, but I've never met before, and say thanks to everyone following my health! I feel fantastic and am really motivated to get some work done towards gettin' graduated!

Monday, October 29, 2007

I'm at Vis!

Well, I got my doctor's approval and so I'm here! Joe and I drove down on Saturday and I've been laying pretty low so far. But, I will be attending a few papers this week, and will be presenting my phd work in the Phd Colloquim on wednesday - 2pm which is different than the printed schedule, but correct online. Anyway, it's been really fun so far and I've been feeling great. I'll try to keep everyone up to date on the rest of the week!

Friday, October 12, 2007

Home again! (should have been posted Tues, the 9th)

So, it seemed as soon as I hit the hospital bed, I was feeling better. Really, I think it was the IV anti-nausea as well as getting fluids. But nonetheless the stay wasn't bad since I just kept feeling better. I was put on a liquid diet, to curb the GI ickyness, and while I did well, my diet progressed to things like toast, canned fruit, and pasta with butter. Well, all of that went down fine, and since all of my symptoms disappeared, they switched me back to my oral medications, watched me for a day and sent me home. I'd say it was a good stay, since the week before I went in I had been feeling pretty awful and now, I'm feeling good enough to get out of bed!

Saturday, October 6, 2007

Back to the Hospital...

Well, I've been increasingly under the weather for about a week now, and it came to a head yesterday (Friday) when I could not stay away from the toilet or keep anything down, including pills. We called up to the clinic and they immediately admitted me. I was feeling pretty awful, but as soon as I got some IV anti-nausea, things turned around drastically, and I now am feeling very good, no nausea, no frequent potty runs. But, I am on a funny diet. When I got here yesterday I was put on a "clear liquid" diet, which means broth or jello. Now, I'm on a progressive diet where I have a list of foods to choose, I can choose 1 and then in 3 hours, if all goes well, I can choose another one. So, they are being really nice to my tummy, which is good. But I'm SO hungry! and all I want is whatever is being advertised on tv! Oooo, this just in, I'm getting some red blood since my hematicrit is low. And it's going to be my new blood type, how exciting. So, the plan for the rest of the weekend is to continue to progress my diet and see how I react, and if it's smooth sailing, I'll probably go home Monday. Else, I'm scheduled for some gut-scopes on Monday to finally figure out what is going on. I'll keep you posted!

Friday, September 28, 2007

Day 50

Well, I'm now 1/2 way through the 100 critical days, and I'm feeling pretty good today. I've had a couple rough days this week with nausea and fatigue, but I'm working on strategies to hopefully improve both. The best strategy so far? Taking my pills with chocolate milk! The thick kind, it just takes everything down with it. And who's complaining about a giant glass of chocolate in the morning? As far as medically, I'm doing great. They think they found a little bit of graph vs host on the side of my mouth, but it's nothing they are going to treat yet, since it's not bothering me, and a little bit of graph vs host is good since it indicates graph vs leukemia. And I lost some of my eyebrows (did I already tell you that?), I'm a little upset about that, but if you look at my head in the right light there is a little bit of hair growing in!

Wednesday, September 19, 2007

Choose your own Adventure!

I know I have been terrible at editing the blog, and I apologize. But I do blame fatigue and nausea for that which has been plaguing me on and off since I've gotten out of the hospital. But otherwise things are going very well, every doctors visit I pass with flying colors and I'm feeling good.

To recap the last couple of weeks, I thought I would make it a "Choose your own Adventure" so you too can enjoy the things that I do in your own way!! Here it goes:

Morning begins between 9:30 and 10:30 with rolling out of bed, and heading downstairs for pills and breakfast.

You may either:
1) Choke on a pill (specifically acyclveir for viral protection) and promptly refund your breakfast.
2) Manage to keep down everything and continue with your day.

If you choose #1 you then go back upstairs to lay down, settle your stomach and nap.
If you chose #2 you have the choice:
a)Go back upstairs to lay down, settle your stomach and nap.
b)Workout with mom. We have been doing some weightlifting and working our abs, nothing too strenuous since my stamina for these things is very small.

No matter which you choose it eventually becomes lunchtime and there is another dose of pills, but this time much fewer and it's typically not a problem.
After lunch you usually go back upstairs to lay down, settle your stomach and nap (especially if you chose option b). Then, once you get up, the whole family takes an outing! We've been to Red Butte Garden, liberty part, the international peace gardens, driven Big Cottonwood canyon over to Park City, and Rei! Don't forget to wear your mask and stay away from any sick people and crowds.

Now, depending on the time, you either nap again, or go straight into dinner, in which case you may once again choose option #1 or option #2. If you choose 1 you go up to lay down, and let things settle. If you choose 2 you hang out with your folks until Dad has to return to their apartment to take care of the cat, which is too bad for us ladies, but we get by with the big screen tv (thanks Joe!) and cards until bedtime.

Now bedtime is the last round of pills and again the stickler pills are in that group, so you once again can choose to refund or not. At this point either choice results in the same laying down for sleep, unfortunately your dinner has had a lot more time to digest. Then, lights out and do it again tomorrow!

I apologize if this has been a little too graphic for some, but I'm just trying to keep it real ;)
However things are not as mundane as it sounds, in fact, Roni is coming over tonight to make me dinner, and Miriah is staying the night to take care of me. Liz and Roni did similar things for me last week, giving my mom a chance to sleep in her own bed and giving me a little social interaction.

So, that's your adventure, I hope you liked it. I will try to start posting more regularly!

Thursday, September 6, 2007

One Week Later

So far, Kristi's doing very well. She's eating, walking, and riding her bike. These are the main things the Docs want her doing now, that and taking HANDFULS of pills four times a day. Though she is out of the hospital, she is watched closely by her parents. For the next 70 or so days (since we are getting close to day 30 already) she's got very restricted exposure rules. She can go out of the house with a mask, but she definitely can't go to any movie theaters or things like that, this includes work/school for now.

At her first checkup on Tuesday, she had a Hematocrit of 34, which is the highest it has been since she found out in April! That's a natural 34 of course, she made it herself. It's still low, but considering how quickly it came up to this level, I am sure it will be normal very soon. So far there aren't any signs of Graft versus Host, GVHD, which is the main concern for the +100 days post transplant. She does have some elevated liver function, which could be an early sign. They are watching this closely. Kristi will be watching for any sudden rashes, which are the most common early symptoms of GVHD.

So far, Kristi is a BMT super star, that's what the docs keep saying anyway.

Friday, August 31, 2007

She's Home!

That's right. She got home yesterday (Thursday) afternoon. I would say she's doing terrific. We did the Silver Lake walk at Brighton/Solitude today, no problem. She's eating real food and sleeping in her own bed for the first time in a month. She was officially released on Day +21. This is an incredible recovery rate and says a lot about how tough she really is.

Monday, August 27, 2007

Out of the Clouds

Hey Everyone! I'm semi-back to life! They are weaning me off of everything like you've already heard and like said before eating is the biggest issue at this point. Some things go down, some don't. But I only have a few things hooked to my trolley and I actually was allowed to leave the floor today (with a mask) but I got a nice walk in - even some stairs. They are moving all of my meds to oral, which is another requirement to get out. So, in the next few days I'll be walking, and trying to eat! -kp

Sunday, August 26, 2007

Day +17

Rather than paraphrase, here is Kristi's Mom's reports for the last few days:

Day +16
"Today Kristi's numbers are all up somewhat. Her ANC was .2, then .1, now today is .3. She is still troubled with nausea that comes and goes, so they decided to do her TPN only half time, 12 hours on, then 12 off. She had breakfast at noon--a half (almost) bowl of corn flakes and cheerios. Then promptly went to sleep. Hopefully long enough to get most of that digested.

Her mouth is better. Tomorrow they may eliminate the basal delivery of pain meds. They considered it for today, but she suggested to wait one more day.

Things are looking up. Doctor Boyer says she is still the star of the unit."

Day +17
"Todays counts: ANC: .4, WBC: 1.82, platelets: 138, HCT: 27.1

The last two are higher than when she entered the hospital.

She is off the basal pain meds and the IV cyclosporin. Later this afternoon she will get a pill for the cyclosporin.

Nausea is still a problem. Of the two meds she can choose for that, they both make her sleepy. I think she sleeps as much as Maddy.

Various rumors suggest going home Wednesday or Thursday. It looks like her ANC might reach the required level at that point, but the eating part is questionable (to me). This morning, though, she had cottage cheese and pears, so she is working on it.

Her lips look healed as does the skin around the Hickman covering. We assume the hot hands and feet will get better now that she is off the IV cyclosporin. You will see such a difference."

This is a good sign that K may be going home soon!