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!

Friday, August 24, 2007

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.

Sunday, August 19, 2007

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.

Thursday, August 16, 2007

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.

Tuesday, August 14, 2007

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.

Sunday, August 12, 2007

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.

Saturday, August 11, 2007

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.

Friday, August 10, 2007

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.

Thursday, August 9, 2007

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.

Tuesday, August 7, 2007

Day -2


Today was the last day of Ablative Therapy. Kristi just finished her last chemo... in her sleep. No problem. She's feeling pretty miserable today, so here's a picture from Xavier and Kim's wedding. Tomorrow is a rest day, and Thursday is the transplant.

Monday, August 6, 2007

Day -3


Kristi's getting her chemo now; Cyclophosphamide. The bag is much smaller than her previous chemos, but the dose is supposedly much higher. One side effect is a horrible taste in your mouth, so she was instructed to eat popsicles the whole time. Yummy for her. Her blood counts are really dropping now, she should be fully crashed out by Thursday.

Sunday, August 5, 2007

Day -4


Today was the last day of radiation. In my professional opinion, K's doing well. Infact, she seems even a bit chipper at times. We now have 2 rounds of high-dose chemo, one day of rest, then transplant.

My parents came to visit this weekend. Nice to have lots of family around. Before they left, we had a cleaning party at K's artspace apartment. Mom did the inside, dad and I tackled the pigeon poo outside. The chicken wire I installed over the skylights has worked perfectly. There has been no sign of pigeons for three weeks. I finally heard from Mandy (the absent property manager) via email the week after I sent out my frantic message about the filth in the courtyard. You can read her response here, to summarize she said that 1) it won't work but they were going to do that anyway, 2) I should be prosecuted for vandalism and trespassing, and 3) Kristi can move if she doesn't like it. Oh yes, and the best part, "I employ a company to come every Friday to clean...", which is sooooo untrue. I have diligently documented the state of the building for at least a month now, and there is no sign of power washing (ever). I hate being lied to, especially via email. That's my dad there scrubbing pigeon poo. Oh, I am ranting. I should be happy, the problem is solved, and Kristi will have a nice(r) place to come home to.

Saturday, August 4, 2007

Day -5


Just one more day of TBI left. The doctors have added an additional anti-nausea med, which seems to work well. She's been awake and happy for hours now!

Radiation affects the body in interesting ways. First it nukes[sic] bone marrow, then epithelial membranes (the gut), then the brain, finally it causes massive organ failure. Naturally, K's only getting a dose high enough to affect the bone marrow with any significance. However somewhere between marrow and gut doses the lungs become susceptible to damage. To reduce this risk, Kristi was fitted with a chest shield. It's a custom set of thick steel plates in the shape of her lungs. It's so heavy that it isn't attached to her, it hangs from the ceiling. She and it are positioned relative to each other via registration marks. Kristi's can be seen here. She will receive a total of about 1.3Gy in several 200cGy doses. In contrast a full pelvic CT scan delivers 30mGy or .030Gy

Friday, August 3, 2007

Day -6


Not much to report today. 2 more TBIs and 2 days of chemo to go. K's main source of exercise is a stationary bike. She is also allowed to walk the halls of the BMT unit, all 20 yards of it.

Her room, and the entire BMT unit as a consequence, is positive air pressure. The air coming in is heavily filtered. This is probably the single most effective anti-infection measure followed closely by aggressive hand washing for visitors. This is important considering the hospital is full of sick people. It's also nice for visitors to get out of the amazing smog in SLC these days. I have no allergies in this room.

Thursday, August 2, 2007

Day -7


Today is the halfway point for TBI; three down, three to go. It's rough, Kristi is very sensitive to it. The staff have upped her anti-nausea meds, largely due to the fact that she puked this morning. Sleep seems to help, and she gets lots of it. Overall, her CBC numbers are good, except for red blood cells. Her hematocrit is 24 today, so she's getting blood... already.

Seven days to go till Kristi's blood type changes from A to O. Yep, should have mentioned that earlier, but her donor's blood type is different from hers. Soon she'll be the universal donor (though she probably won't ever be allowed to donate), and she will have a completely new set of allergies.

Wednesday, August 1, 2007

Day -8


Day 2 of radiation. K spent the morning feeling nauseous and tired. It seems to me that the radiation side-effects are worse than the chemo. They have warned us that it will get worse too. Kristi's tough tho, and I am not worried. Especially since she's pigging out on a juicy London Broil now.

Vis paper's are due today, and K thought that an image from our paper would be appropriate for today's post. So there it is. It illustrates a new image representation method that allows one to conveniently represent semantic information and discontinuities in raster images. Need to know more? Here's the paper.