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!

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.
or
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.
or
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!

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.

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.

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

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!

Day +14

Things are starting to look up. Kristi is feeling better every day. Her counts (platelets and white blood cells) are starting to come up. Her mouth and throat are starting to heal, which the doctors say is a very good sign that the graft is taking. Who knows, she could be getting out soon. She's still having trouble eating. This is one of the main criteria for getting out.

Days +8,9,10

I have been able to talk to K several times in the last few days. She has the pain fairly well under control now. This includes both a constant drip and a PCA (button). She's having some side effects from the Cyclosporin. This is an anti-rejection med that can only be mixed with water and dextrose. Apparently, there is something else in it that makes her hands and feet burn. Thankfully, they have a special lotion to take care of it. She's been getting regular infusions of platelets and blood too.

I wish I had more details or pics. It's hard being far away. Maybe in the coming days, K'll be up to doing some blog posts.

Day +7

There isn't much new to report. Kristi is still feeling very bad. There isn't much change in her condition, she's ok physically, but in a lot of pain. She gets a shot of Methotrexate (a chemo-therapy and anti-rejection drug) every 5 days or so. This seems to flair up her sore throat and mouth. She had one yesterday, so today is pretty miserable. The Docs said that she should start feeling better soon, easily within a week. I accidentally dialed her phone number last night (I was trying to send her a text message). She tried very hard to talk to me, but had to give up pretty quickly.

Oh yeah, she shaved her head again. It was inevitable. Sry, no pics yet.

Day +5

I am back in New Mexico now. I called K last night to let her know that I made it. Of course she can't talk, so she communicated in sighs and coos. From her mom's update, managing her pain is the main issue right now. So far there is no sign of infection. She's on something for everything; Sulfa to prevent pneumonia, antibiotics, antivirals, antifungals, anti-rejection, and anti-depressants. K's throat is still very sore, she reports a pain scale of 4 to 5 out of 10 constantly. Despite this, I see that she's been online today (tho I missed her) and apparently working (she had LaTeX questions). Here's another picture from Kim and Xavier's wedding, Liz, Miriah, and Kristi.

Day +4

I am leaving for New Mexico today. I have to go be a Prof again. Kristi still isn't feeling well. The doc says this can go on for some time. Her computer is in the shop, so she won't be answering email or chatting for a few days (at least). Hopefully, she'll be up to blogging when her machine is fixed. It's going to be hard to leave, but I think this part will be over before you know it. Just 10 more days till we are two weeks post transplant. Sounds like the magic number to me.

Day +3

This is the view from Kristi's window. She rarely looks out it since her bed puts her head at the opposite side of the wall. (you can click it to see it larger, the lower left infra-red) K apologizes for not answering the phone for the next few days. She has Chemo-Mucinitis, a really really sore throat. She had this after the last round of chemo, but this is 100x worse. Right now she only talks in whispers, when she has to. Only the most gentle foods work: Strawberry shakes, Jello, Pudding, Cottage Cheese. She now has a patient controlled dose, a button she can press to get a dose of morphine. This also means that she'll have even more reason to sleep. Sweet dreams K.

Day +2

The side effects of radiation and chemo are really starting to ramp up. Kristi had a hard time eating this morning due to a sore throat, which has been building for days. This is due to the chemo and not an infection. The BMT unit is big on managing pain. She hasn't had to spend much time suffering from it. Unfortunately, heavy drugs mean lots of sleep. We have a lot more of this ahead.

Day +1

The day after. Kristi's feeling a bit icky and run down. But she got out of bed to hang out with me. Today, she's getting her first does of Methotrexate, a chemo/anti-rejection (graft v/s host) drug. This is another one that requires popsicles to administer.

Kristi got a letter from her donor today. Adressed to "Recipient" from "Donor", it sends happy wishes for her and a hope that he/she gets the chance again. I bet they feel good! Anyway, nearly everyone in the room agrees that the handwriting looks feminine. But, I'm not so sure. And who says that the donor herself actually filled it out. Quite a mystery. We are considering writing back with a secret message. I guess we should first check if there is one in this letter.

Day 0

Kristi is getting her transplant now! This is probably the most... convenient? transplant you can get (modulo 9days of ablation therapy). It is simply a transfusion (you can see it in her IV line). This is true for the donor too. In this case, Kristi randomized to a study using stem cells extracted from peripheral blood, rather than bone marrow. For the donor, this meant an IV extraction of blood, which was filtered to extract the stem cells; a far better prospect than 200 individual bone marrow extractions. The doctor wouldn't tell us the gender of the donor. He says we have to wait for one year. I think she's female, K thinks male.

Despite my nervousness, K's doctor says she's a super-star of the BMT unit for doing so well tolerating the ablation. She certainly is a tough one, if not a sleepy one. Nurses and aids gave her the birthday balloon and a cute blanket with a heart on it (seen in the lower right corner). This is terrific for Kristi. She gets to celebrate two birthdays, with the second one three days before mine;)

Up next: around 25 days of waiting for the transplant to graft. Once her immune system is back up, she can go home. After that, we look forward to day 100, which is the landmark for acute graft versus host rejection. Eventually her new immune system will accept her, and rejection will no longer be an issue, around 1 year post transplant. The transplant itself, yes all of it, is seen at the right.