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.