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.

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!

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!

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!

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!

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.

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.

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.

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.

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

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.

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.

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.

Day -9

Today is K's first day of BMT. I am out in the waiting room while she's getting her first TBI. They wouldn't let me in. After that, she gets a new Hickman Central Line, which surprisingly she's looking forward to. Today is Day -9 because Day 0 is the day she gets the stem cells. I can say that she's in great spirits and happy to finally be moving forward with her treatment.

K says TBI was no big deal, she didn't feel a thing. 15 minutes of buzzing was the only annoyance. Now she waits in full patient regalia for the hickman.

So, she's checked in now. It's not bad at all. Everyone's very nice and she'll get lots of attention; it's very nearly one to one here. Below is the view from her window.

Here we go

It's Monday, early afternoon, and Joe and I are sitting in the BMT clinic at Huntsman. I've just gotten an IV and some blood drawn, both of which barely hurt! I love the nurses in this clinic, they all know everything about me, and it's much more personal than the oncology clinic that I was going to before. But that means that I'm officially a BMT patient, so I won't be going to my hematologist oncologist until the BMT people are done with me, which will probably be 6 months or more. It's a little strange changing hands like that, but like I said, the people here are wonderful.

So the schedule of events starts out today with a bone marrow biopsy and a "lumbar puncture" which is a spinal tap. Wow. I'll let you know how that goes, but based on the talk of the nurses, they are really concerned about pain, so I'm not too worried. Then, tomorrow morning at 8am I go in for the first day of radiation. After that I'll get checked into the BMT unit at the University Hospital and at 1 I get a new central line placed. I'm definately looking forward to the line, since I'm sick of being poked! Overall I'm not too nervous, I think things will go good, and I'm looking forward to getting this behind me!

[joe says] The image to the left is three vials of K's CSF. It was interesting, and I now understand why they call it a "tap". It was a bit like milking a maple tree to make syrup.

She's home!

Kristi's Neutrophil counts hit 1K today, which is more than enough to get her home. She's got one week to enjoy life on the outside before she goes in for a solid six weeks. We will be making the best of it for sure. For now, "making the best of it" is a nap in her own bed. My main objective this week is getting her recovered; slept, fed, and exercised.

Every little bit

Well, it's Sunday, and I'm still here in Huntsman, but, my counts are going up. We are waiting for my nutrifill counts to get above 500. Yesterday they were at 200, today we're at 380, so that's a marked improvement, and finally during rounds they could actually say my counts are getting better. I was getting a little disheartened for a day or two, but it's mostly cause I wanna get the heck outta here! So, there is a chance that I can leave tomorrow after another Ultrasound of the blood clot in my arm, but of course, that depends on counts.

Happy Friday!

Well, today was another day of education, but first I got a CT scan of my abdomen and pelvis which meant a big hearty breakfast of contrast. I really take advantage of the anti-nausea drugs, since that stuff is pretty dang gross. However, the drugs make me really sleepy, as Liz and Miriah can attest to - thanks for visiting, sorry I couldn't stay awake! Finally I got up at 1pm and had some lunch and then went downstairs for the TBI consult. More side/after/long term effects, but all in all it doesn't sound too bad. It will be tiring, but it won't hurt. So that starts 8am Tues the 31st. I'm starting to feel better about this whole thing.

My other news is that I had to get another IV today. I don't know if I told ya'll I got a new one last night, they only should be in 4 days, and my first one had to go. Last night's insertion wasn't too bad, but by the end of today it started to leak as in fluid was coming out of the hole the needle went in -YUCK. So, I got a new one from an Airmed Nurse, which is a better bet that they can get one in me. It hurt, but now it's quite comfortable. I now think that the lovanox shots are not as bad as IV's, but they still are pretty lame. Well, I'm about to head to bed. I've finally got prescribed sleeping pills, rather than having to take pain pills for sleep, so that's really great. Tomorrow should be pretty quite, hopefully I'll get some work done!

Sorry I don't have pictures, but all they would be of is the thousands of prick marks on my arms and tummy, and you wouldn't want to see that!

Meetings, Meetings, and a Slightly Higher Count

So today was filled with Bone Marrow Transplant (BMT) education. I had a visit from a nurse who gave us a full overview of the process, a pharmacist, dietitian, social worker, and financial guy. It's great to get all of this information, but MAN is it overwhelming. All of the stats and possible side-effects, any thing bad that could happen. I'm a little freaked out by the whole thing. Of course, there were the same things with the induction and consolidation chemo, and I did really well. As Han Solo said, "Never tell me the odds." Anyway, the treatment regimen is going to be 6 days of total body irradiation (TBI) and two days of chemo therapy which is just a one-hour drip each day. Then a day a of rest and I'll be infused with the new cells. Then, it's recovery for the rest of the time. When they decide to release me, it'll be based on my blood counts as well as my ability to eat, I guess it's common to have eating problems like nausea and mouth sores.

In present news, I'm feeling good, and haven't had a fever in a a couple days now. My sore throat is also almost gone, and my arm doesn't hurt any more, but I can still tell there is some clot there. My white blood count has risen to .68, once it goes above 1.000 I can go home! The doc thinks that might be Monday. I'm hoping it's sooner! Wish me blood cells!

I have a SCHEDULE!

Well, I just talked to my BMT coordinator and it looks like things have actually settled into specific dates, crazy! So I am planned to be admitted for my bone marrow transplant on July 31st. Then, my donor cells will be hand-delivered to my pole (octopus as Joe calls it) on August 9th. So before then, I have to 1)get my white blood count up and get the heck outta huntsman
2)try to figure out my transplant wardrobe 3)go to dozens of doctor's appointments 4)knock off all my other to-do lists and 5) have lots and lots of fun, which will include a visit from Gordon and Kim and Xavier's wedding! Well, I'm off to grow some white blood cells.

It's Raining

So, the weather outside is crazy, and one nice thing about being up here is that I get a really good view of it. So here it is. On another note, I'll let you know what my days up here have been like!

My day starts off between 6 and 7 with a blood draw. I'm starting not to mind these as much, depending on the phlebotomist and the type of needle they use, it can be pretty close to painless. Plus, if it does hurt, it's over in just a couple minutes. Next, I get a visit from the new nurse on duty, answer the same old questions about pain and bm's and any other complaints, and then get the chest/heart/lung/tummy exam with the stethoscope. The aide takes vitals at various times throughout the morning. Then around 9am it's time for meds, my anitfungal (by mouth) and the really stingy, bruisy, I'm complaining now, blood thinner shot. My folks have been nice enough to get up early and arrive here around this time too. Of course I'm not out of bed or anything, it's still 9 in the morning! So I lounge and eat some breakfast and lounge until the doctor's do their rounds anytime before 11. About this time I'm feeling gross enough to get out of bed and into the shower. Next is the nuepogen shot, which, like the blood drawing I'm starting to not mind. It can sting a little if the nurse pushes too hard, but it goes away instantly. The blood thinner stings for like 5 more minutes! Anyway, I get another blood thinner shot around 9 and an anti-fungal, and they are also drawing blood at night to check on my platelet levels. They are giving me antibiotics too through the IV, but since I don't get poked, I don't really pay attention to their scheduling. So there it is, 5 pokes a day, the 1st, 3rd and 5th which aren't so bad, and the other two which seem to have become the rant of this post. I hope you like the photo.

Finally! An update

Ok, so Joe has added me (KP) as a blogger so that I can keep everyone up-to-date while he's busy being a professor, and hopefully between the two of us we can keep ya'll informed on what's going on, which in the next few weeks will be alot.

So, since the last post you know that I went through a "consolidation" round of chemo, and was released to go home. Since then I've had a few complications, the first being the prednisolone eye drops I was given to protect my eye from the chemo. I was starting to get blurry vision, and the doc said I could stop the drops. Well, the next day I could barely open my eyes, and I went to the Moran Eye Center Triage. There, they gave me a full eye exam, learned about the effects of cytarabine on the eyes and diagnosed me with extremely dry eyes. So, I am now on a constant regimen of eye drops (like once an hour). But my eyes are feeling much better now and my vision seems to be clearing up.

Unfortunately this eye issue overshadowed another, more serious complication, that of my arm hurting where they had put in the midline. It had hurt in the hospital, and since it's removal has hurt less and less, but I noticed that my veins were popping out when I used the arm. Well, I didn't stress over it until 9pm Friday night (good timing) and so Joe and I went into the ER for 3 hours, but they didn't have an ultrasound tech on-call, so long story short, I went back with my parents on Saturday (another 6 hours) and finally got an ultrasound that showed a blot clot from basically the point of insertion up to the sub-clavical vein (like the whole length of the midline). So, that means I need to go on blood thinners, but because of the chemo, I have low platelets levels which means I now have to navigate a tight rope between getting the blood thinners and maintaining platelet levels.

So, after all of that time spent in the ER, Sunday morning I wake up with a fever and get checked back into Huntsman. It's a bit of a bummer, but now they can manage the whole blood thinner/platelet level issue without much trouble. My platelet level is being checked twice a day, and I get a couple of lovanox shots (blood thinners) each day in the tummy fat which are stingy and make big bruises. I actually managed to give myself the injection before we came into Huntsman on Sunday, and have been self-administering daily shots of nuepogen (stimulates white blood cells), something that I never thought I would be able to do (and it's not so horrible). Though it is nicer to have a nurse do it so I can look away and cringe.

They have me on antibiotics, but my fevers seem to come and go, however I'm feeling better than I did yesterday. I'll be staying here until my white blood count is high enough to let me leave with some sort of immune system. My room # is 4509 and my cell phone actually works in this room!

The Icky

Kristi lives in a neat converted warehouse run by Artspace. It has one major problem: pigeons (a.k.a. sky-rats). They simply love the very high, dark rafters of the common courtyard interior. The courtyards have some nice, open skylights which they use as doors. The management of the complex is well aware of the problem, but simply refuse to do anything about it. Save one instance, when they put up spikey things on the outside patio so that the business located here can have catered parties (sans pigeon droppings in the cake). I have been very diligent about discouraging the pigeons using a squirt gun loaded with cayenne peppered water. This works but as soon as you let up for even a day, they are back. Needless to say, the entire interior of her building is covered in guano. I drafted a nice letter to the management about he problem, but haven't heard a thing. Last weekend, I gained access to the roof and put up plastic chicken wire around the seven 2.5ft by 50ft openings that the pigeons use to get into the courtyard. Today, I ran into our security guy, Jonah, who said that the building manager, Mandy (364-1019 whom I have never been able to get a hold of), told him, "You can't do that, take it down." Needless to say, I am livid. Tomorrow, I will be calling the Salt Lake Valley Health Department, hiring a lawyer, and doing my very best to find out who Mandy Beeler's superior is. I feel strongly that this situation is very unsanitary, even for a healthy person. John, our next door neighbor, won't let his dog walk across the courtyard floor. I also think that Kristi's trip to the hospital last month was due to the pigeon crap. You can imagine this is going to be a problem now that K is nearly neutropenic and about to enter the bone marrow transplant, which will leave her even more compromised. The picture above is what a typical hand-rail looks like inside the building. The picture below is the floor underneath one of their nests. The great thing happens when the tenants of the art studios hose the pigeon poo off the catwalk onto our resident patio space below [sic], makes a lovely sludge for us to walk through on our way to garage and garbage dumpster.

Home again, home again

We brought K home yesterday (Sunday) at noon. The whole day was pretty miserable for her. She was beat from the chemo and her arm hurt from the line. They took it out before she left, but I think that only enraged her arm. We did everything we could think of to make her comfortable. Once she got through the night, however, things got right back to normal. She woke up early feeling good and a bit restless. We have tons of doctors appointments to keep us busy, don't worry.

Pokey Things

It took some convincing, but earlier this morning Kristi's Oncology Fellow talked her into getting another midline installed. After the trauma of the Hickman removal, she was not interested in any line. The negotiation included morphine, Valium, and lidocaine. She had the same techs install it as the last one, they did a great job. The only painful bit was the lidocaine. The main rationale for getting the line is the risk of vein rupture using a "peripheral line" (traditional IV). Apparently the fine veins in the wrist and upper arm aren't strong enough to endure the non-stop drips that she's on. Anyway, she's far more comfortable now without a metal needle in her arm.

Consolidation

Kristi got the call that a bed was available a the Huntsman today at 3pm. They wanted her there by 3:45. It's 4:00 and we are checked in. She will have 3 rounds of high-dose AraC over 5 days. Because of the infection a month ago, she will be an in-patient for the whole thing.

K also got a call from her BMT coordinator today. She's been fully approved for the transplant and a marrow/stem cell order has been placed for 5 weeks from now. This means that she will probably go in for the Transplant on August 1. She has agreed to be part of a study to which she may randomize to have only the stem cells, rather than the raw/filtered marrow. The information we have read about this study has been very positive.

Moving Forward, I think

Kristi had 3 doctors appointments today, including blood work, chest x-ray, and pulmonary (lung capacity) tests. There are are many more to go:

• Dental (done)
• OB/GYN (done)
• BMT labs (done, see image above)
• Chest X-ray (done)
• Pulmonary Function (done)
• EKG
• ECHO (cardiogram)
• Bone Marrow Biopsy
• BMT Clinic educational appointment
• BMT Pharmacy appointment
• Dietary consult
• Social Worker appointment
• Finance consult
• Up-date H&P
• Admit Conference
• Start Bactrim
• Depopevera shot
• Dentist: Fill Cavities
• Central Line Placement
• Admit Day

As you can see this is a long list. However, we think it's the "One Month Out" list, especially since there is an Admit Day on it, though there is no actual date on that one.

News, almost

K's been on the phone a lot today. Her transplant coordinator has been trying desperately to move things forward. Right now, there is some hope that she can just skip the consolidation chemo altogether. This would be great since chemo is 1) basically poison so minimizing it is good, and 2) relatively unnecessary if she can get the transplant early since it will completely wipe out her immune system anyway. Also, early transplant means that I can spend more time with her during and after. School starts in the middle of August. No news on the swollen lymph node yet. She has a number of hoops to jump through to get Medicaid's approval for the transplant including a drug test, blood tests, and possibly yet another (medically unnecessary) bone marrow biopsy. The picture above is Kristi standing in the window of our new Warnock Engineering Building office. You can almost see her place down at the end of 1^st south.

A Minor Delay

Kristi had a CT scan yesterday to examine a superficial lump on her throat. At first they thought it was a clot, but the ultrasound done on Weds showed that it wasn't. The CT didn't produce any new insight, so she had a "fine needle extraction" (FNE) biopsy today. It looks like it's an abscess. While this is no call for alarm, it will delay her consolidation, which was scheduled for Monday. Dr. Shami is fairly sure that this isn't associated with Leukemia; most likely it was caused by the Hickman central line. We won't know for sure till all the tests come back.

I finally got around to processing her CT data today. The image to the right is a Maximum Intensity Projection (MIP) of yesterday's scan. The radiologist and I get along great now, which allowed me to get the absolute raw data. As far as volume datasets go, this is nearly perfect, clean, isotropic data. Sadly, K has a few oldtimey fillings that caused some beam hardening. I'll probably have to fix this by hand so that she doesn't look like a snaglepuss when I render her.

A Match!

Kristi had a surprize meeting from her Transplant Case Worker at her doctors appointment on Monday. The word is that they have a "Very Good Match" for her! This is terrific news. We are anticipating that the transplant may take place in about a month, which is well ahead of the original schedule. She's going back in for her "consolodation" chemo treatment on Monday. She'll be at Huntsman all week. Unfortunately, this means that I will be bringing her home in a Neutropenic state. We will have to watch her very carefully. As usual, if she has a fever, she will be admitted back to the Hutsman immediately. I have been working hard to fortify her place against the ravages of Pidgeon droppings that I suspect are a source of potential infections. Also, yesterday she had her midline removed from her arm. She is completely free of tubes sticking out of her for the time beeing. We are hoping that they can do the chemo with a regular IV. It's very nice not to have daily line flushes, which eliminates the risk of line infections that send us to the hospital for days.

Here are some shots by Pete from one of the stops on KP's Cancer Cat Scramble. The shot above is of the Fastest Female Julie Holms posing with Kristi's parents at a stop on the race. The Park Record's Anna Bloom did a nice piece on the event.

Alley Cats

The race should be staring in about 15 minutes. BTW, slight change of location; since Galavan is booked right now, we are meeting across from Galavan on 200 south. See you at the finish line!!! Congrats to Joel for First Place Male! He gained 30 minutes at the "Huffy Toss" with a record seven throws!

Aaron the agro-organizer.

Roni the ticket pimp.

A sweet ride!

Birthday Girl

Today is Kristi's Birthday. She is 30! Twenty-something is over. Sadly, she gets to spend her big day at the Huntsman. We are planning something at a later date. Yesterday, she had the Hickman Central Line removed. Apparently it was the source of her troubles. It was a rather invasive procedure, they had to use a scalpel and everything. To replace it, she got a new line in her right arm, which she hates. Her right arm is basically useless right now. It's very sore. She's super tired today as well. Because of the fevers, she gets vitals much more frequently. She had a low grade fever yesterday, so the clock for getting out was reset. The nurse estimates that 48 hours of normal temperature is required for her to go home. This infection will most likely require her to be in the hospital for her next round of consolidation chemo.

Addendum

For her birthday, the hospital let her go home at least a day early. She spent the after noon resting and getting the kinks in her back and neck worked out. The new line isn't much fun right now, so she's temporarily left handed. She's still dealing with the trauma of yesterdays procedures: removal of the Hickman and insertion of the new line in her right bicep. She told me that it was the worst day yet. I thought the fevers were worse, the rigors were something. She's finally sleeping. It's far better in your own bed.

Fevers and Benefits

About an hour after K's BFF, Ton, left for Portland she spiked a fever. It got up to 102.8. I called the doc, but it came down fast enough that she didn't need to go to the hospital. Today, at our 9am appointment, she got another fever, right in front of Dr. Shami. I have never seen anyone shiver so hard. Her fever got up to nearly 104. She was checked into the Huntsman 4^th floor immediately. She'll probably be there for a day or two under observation. She's on a broad spectrum of antibiotics. We are still waiting for any news on the blood cultures. Her CBC showed very elevated white blood cell counts. The blood smear didn't show any abnormal cells, so this was due to the infection, not Leukemia.

Oh, oh! I forgot to mention; Kristi's bone marrow biopsy was great. All of her numbers were good and and not a Leukemic cell in sight. Dr. Shami says that this is "Officially Remission." Which is a ver good thing. Kristi thinks this is more interesting than the fevers.

In other, funner news: Aaron Campbell has arranged what is sure to be an exciting event to support KP. Here's the blurb:
--snip--
Hi all-

This Saturday (June 2nd) there will be an alleycat race to benefit Kristi Potter! For those who don't know what an alleycat race is, you can learn about them here. In short, it's a fun bike scavenger-hunt-like "race" through the city that requires no spandex and no carbon fiber. And it even comes with a party at the end! It's a $20 donation to race, with time bonuses for extra donations (like bribing the officials, only legal). The fastest male and female racers will win custom-designed bike frames from NYC Bikes.

If you don't want to race, you can find someone who does and help them earn time. There will be a raffle with lots of cool prizes, like Black Diamond headlamps and other fun stuff.

This race is as casual as you want it to be, but if you don't want to ride, we will need some volunteers to help out. For anyone who has been wondering how to help Kristi out financially, this is the perfect opportunity. Remember, even if you don't want to ride the race all the way through, you can still get a warm feeling inside from entering the race and partying at the end (which will include beer, and a replaying of the films from the Pedal Pusher Film Festival).

If you have any questions, send an email to Miriah, Roni, or Liz for more of the scoop. We will see you there!

Please see the attached flyer for more details.

-The KPAML Project

Thursday already?

Wow, time flies. K is stronger than ever. The University paper just did a story on her. We did 20 miles on the bikes yesterday, and are planning the same for tomorrow. Her blood work looks fine, but we haven't heard back about the chest CT. Tonya is coming to visit again this weekend. It's memorial day weekend, so we going to be seriously busy, but that's a good thing.

Silver Lake

Silver Lake, Twin Lakes Trail, 5 miles.

Thanks to Abe for a generous slice of his hand made birthday cheese cake.

Super Kristi

Kristi gets in touch with her super alter ego, Sleep Girl. Her special power: she can sleep through anything. Our visit to the doctor this morning didn't bring the best news. She has a fungal infection of the liver and spleen. This most likely happened while she was neutropenic during "induction" chemo. The infection was detected first by the elevated liver enzymes and confirmed by lesions in the CT scan. She's now on antifungal meds. Originally the plan was to have her take an oral prescription, but at $30/pill, that's sort of out. Her insurance will only cover it if it's IV. So it is. She should be fine in a week or two. This news moves her next round of "consolidation" chemo back a week or so. This is might actually be a good thing, since now she won't be on chemo for her up-coming birthday. She also had her bone marrow biopsy today. We don't have the results yet. The procedure is invasive enough that she has been forbidden to lift anything for about a week. I should verify with the doc if this really means that she can't weight train at all. Would be sad, since we invested some time in setting up a little gym in her room.

Biker Porn

The Bike Collective is having a film event this Saturday. Should be fun for all, and a good warm-up for a Kristi bike event... say tuned. Kristi worked with the bike collective a few years ago to buld a super sweet single speed from scratch (for only $100).

Numbers

Kristi's blood work is looking very good. Although, her hematocrit is still dropping slowly. This isn't a problem right now, she is still in a healthy range. Just to be sure her liver functions are a-ok, she will have another CT scan on Thursday. Today, we picked up some more hand weights and a workout bench. We also picked up some protein shake mix stuff loaded with Branched Chain Amino Acids. Now we can follow Casey's workout regimne to the T.

Working Out

We are getting pretty serious about working out now. Aaron Lefohn hooked us up with his friend Casey (First Lieutenant), who is a physical trainer and an infrared optical physicist. He's designed an exercise and eating regimen for us. Right now we are doing cardio for 30min in the morning before breakfast. Our aim is to get our meals up to 4-5 times a day, with around 30g of protein per. We will do strength training 3 times a week. I have been working hard to get my cooking skill up and making good meals. We eat a lot of fish and veggies.

hiking

Excersise is primarily walking and hiking to get started. She's up to 3 miles a day. Today we drove down to Sundance. Kristi took this picture at the top of the canyon by Aspen Grove. Her follow-up check-up on thursday showed liver functions returning to normal. She seems to be feeling better and better each day. We will be getting the bikes out any time now.

Project Kristi: Day 1

Today went very well. I made K a very healthy, balanced breakfast including OJ, eggs, and greens. We hiked 3 miles up City Creek Canyon. She did great despite abdominal pain caused by her one handicap (she doesn't know how to burp!) Today was her first checkup since she was released from Huntsman. She's slowly finding out that she has quite a few more bone marrow biopsies to look forward to (though none today). All of her blood work counts are up. We hypothesize that this is due to the cytokines that she was given a week and a half ago. Although she's showing some elevated liver function. Hopefully this isn't a sign of something big, but she'll have more blood work done on Thursday to find out for sure. The doc says "Absolutely NO alcohol." He seemed disappointed in me for letting her have a beer.

Solidarity Video!

Chems Touati produced a stunning video of Solidarity Day, which also nicely summarizes Kristi's experience thus far. Music by The Shins. (They are from Albuquerque you know) Thank you Chems! You Rule!


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GK's Healers

Thanks to Gordon for the extremely well designed, handmade Calder-esque mobile. This work includes detailed pack/unpack instructions with a reusable box. The mobile itself has images of various healers from different cultures/religions, including Pastafarian.

Here it is hanging. That's K and mi padre.

No News is Good News

It's been a while, no? I have been ver busy in ABQ taking care of my Professorly responsibilities so that I can spend my summer in SLC. Kristi is doing just fine. (Yes GK, I swear). Kristi was very unhappy with the mangy look her hair was taking on. So, first thing this morning we "bic'ed it". Roni gave me some valuable practice shaving heads at Solidarity day. Joel, provided a strong warning.

This is graduation week at the U, but Kristi's waiting till next year to walk. Even so, we have the whole family here for the weekend (Mine and hers). I have said this before, but it's nice to reconnect with so many important people in our lives even if the circumstances are ...

I promise to keep on KP's progress from now on. (Though, when I promise something, it's usualy because I wont.) We are starting "Project Kristi" on Monday.

Mondays aint so bad.

Today is K's first full day on the outside. It feels like she just got out of prison. We have already done some shopping, banking, pinball, librarying, etc... Last night was her first uninterrupted sleeping session in over a month. I can really tell the difference. Right now we are waiting for a "home health service nurse" to stop by. Kristi keeps the Hickman till well after the transplant. She was trained to maintain it at the hospital, but she's still getting someone to do it for her (at least for now). We had a seriously scary moment the other day. I came in from the patio with my sunglasses on, and tripped over her lines!! It gave both of us a start. Luckily it didn't tug on the Hickman. Though it could have potentially yanked it out! We we were freaking out a bit. The nurse said that it happens. Sometimes old people just pull them out. "Direct pressure" is all that's needed.

Oooo, goody. We are going shopping for cruzer bikes!

Remarkable

Sometimes the littlest things seem remarkable.

Kristi's home!

I have a nice picture of her, but her network is a notwork. There it is! Thanks XMission! She's home and already restless. We are done with the first phase, but there is a lot of work to do before she goes back for the transplant.

Anxiously Waiting

We are hopeful that Kristi will be able to go home today. We are waiting for rounds. She's still a little nauseous, and she has a sore leg (we walked a lot yesterday). Kristi's white blood cell count is now within normal range, 11.8*10³/uL. Notice that when she arrived, her WBC was nearly five times higher than normal. The recovery of her platelet number is all her, she hasn't received platelets in several days. The recovery of WBC was accelerated by the Neupogen injections (at several thousand dollars a pop). Her red blood cell count went up today thanks to two units of A- that she got last night (they wanted to be sure she was strong when she went home).

So rounds went well. They are going to do an ultrasound on her leg just to be sure. Although the clot is very superficial, they are checking it out anyway. After that, we are going to start the checkout procedure!

Kp just had her ultrasound. She has a small clot in a superficial vein. This shouldn't be a problem. It's really just a bruise. She'll get a follow up to be sure. She's working through the exit paperwork now.