Late Night Thoughts
Thursday December 27th 2007, 3:34 am
Filed under: Leukemia

Feeling sleepy and comfortable. Been able to sleep quite a bit. But also feel thoroughly restless and not sleeping as solidly as I’d like. Weird combination.

One time disclaimer: sometimes I’m going to vent gross stuff.

Concerned that I thought I was constipated all week, and then found out I’m totally empty. Frustrated with the idea that I can’t tell what’s going on inside my body and that I may have been hurting it by pushing it too far the wrong way. When I was in the ER on Sunday, they took pictures that said I was full, and I don’t understand how between then and now I became empty. Lots of frustration about this, lots of confusion.

Dr. Mike determined tonight that the vinchristine is definitely giving me neuro side effects. Tingly fingers and feet and weakened extremities in addition to the toxicity (and yellow color) it has given me definitely highlights how powerfully these drugs can change the body. The steroids shoot my blood sugar through the roof, give me the shakes, and weaken my muscles, and the vinchristine unleashes other havoc. I don’t for a second regret being on these drugs or question their necessity, but am constantly in awe of how much shit you have to kick out of yourself before you can rebuild.

I’m hungry and thinking of various foods I’d like to eat at 1:42 in the AM. I haven’t really been hungry in some time.

Today when I first went on the dilaudid, I was taken down to radiology for a CT Scan and got left on the CT bench for about an hour without anyone saying anything to me (later they said they had computer problems?). It vibrated nicely and I took a nice little drug-stupored nap. I think my mom thought I had been kidnapped.


Re-Admitted To The Hospital; Feeling Good
Thursday December 27th 2007, 12:07 am
Filed under: Leukemia

First off: I’m on dilaudid, a painkiller that is making me feel good, but doesn’t exactly leave me at my most eloquent. I want to get out a few facts and hit the hay, but if this doesn’t all make sense, I blame the dilaudid!

Since my chemo on Friday, I’ve been feeling steadily worse with stomach problems and various other maladies. It’s crazy how much worse this process makes one feel before feeling better. As my dad keeps saying, though, we’re rebooting the system and that’s not an easy thing to do. It’s deconstruction.

I fell in the bathroom on Sunday while my dad was out for a short time. My mom heard me fall and came to help, but I was so weak that I couldn’t get off the floor for about an hour. It took my mom about an hour to get me into bed. It was scary and very, very frustrating. We went to the ER, and they took me off my blood pressure medication. Suggestions were made for the abdominal pain.

Last night in addition to the pain I’ve been in, we noticed that I was turning yellow. Yellowish skin, yellow eyes, the whole works. We called the clinic, and they had me come in today.

This morning, touching my stomach, let alone moving, was unbearably painful. I was a moaning mess. The decision was made fairly quickly upon arriving at clinic that I would be re-admitted. My parents have taken to carrying a “pregnancy bag” in the car that basically contains whatever I’ll need to stay over at the hospital whenever I need to (toothbrush, jammies, etc). Ever prepared, again, I can’t imagine doing this without the two of them. I’m blessed.

I was given dilaudid (this post has taken me all day–I really can’t think straight on the stuff), which calmed me down and has made me feel much, much, much better. Tests revealed that I’m yellow because of a toxic level of bilirubin, which presents as jaundice. There was a concern that I might have an infected pancreas or something, but the current thought seems to be that the toxicity is from my chemo last Friday.

This Friday’s chemo may have to be pushed back or weakened a bit while we observe what happens and clear out my system a bit. Different chemo drugs effect people differently, and apparently once patients get into their 20s, vinchristine has a higher chance of causing toxic effects.

People keep expressing empathy that I’ve been re-admitted; everyone is sorry to hear I have to stay at the hospital again. The truth is, though, it gives me great relief to be back. After days of not knowing why I was feeling worse and worse at home, I feel like I can worry a little less. As much support as I have at home, it’s a very good feeling that there’s somewhere I can go where people are logically figuring out what’s wrong with me, why, and how we’ll deal with it.

A lot of nice calls (and even some visits) over the past few days.

Spoke to Amy today at great length. Was very comforting. We made the decision that her next visit will be a celebratory visit, so we’re going to wait until after induction (phase one treatment–prednisone, etc). We will eat cake and Coke when she comes.

It felt very important to post all this, because even though I’m having trouble thinking with a lot of clarity, this is the first time I’ve felt up to posting in days. I woke up feeling just horrible, and now I feel like I can get a good night’s sleep.

With love from la la land,


New Christmas Video!
Sunday December 23rd 2007, 11:59 pm
Filed under: Better Than The Machine

In lighter news, my sketch comedy group Better Than The Machine posted a new Christmas video today. It’s a smear ad about a kid who doesn’t believe in Santa.

Mad props, guys. I would’ve gone the “post a video from our two-year old Christmas show” route this month, but you guys went above and beyond and did a great job. Very funny!

Makes me proud.


Tough Day, Med Changes?
Sunday December 23rd 2007, 6:01 pm
Filed under: Leukemia

Got lightheaded and collapsed today. Spent some time at the hospital, but home tonight.

Taken off blood pressure meds because blood pressure got very low. Blood sugars also seem to be coming down fast, which also could be contributing to lightheadedness. Might have reached some sort of new equilibrium and seems meds now need to be adjusted.

Wasn’t feeling well enough to see any of the Christmas party folks, but I appreciate all of your calls. Hopefully I’ll get to see you soon.


Bone Marrow Results: Slow Response
Friday December 21st 2007, 10:31 pm
Filed under: Leukemia

The hoped 80% > 5% drop in leukemia in my bone marrow unfortunately did not happen. The percent of leukemia cells is hovering around 20%. This means that while I’m responding to treatment, I’m doing it slower than the doctors would hope.

When patients respond slower like this, there is a greater risk of resurgence of the leukemia after remission. There is also an increased chance that the leukemia will sneak into my spinal fluid and brain. Both would be bad.

With all this in mind, another phase of treatment will be added of intense chemo and, for the first time, radiation. This won’t happen during the first 28 day treatment, which will stay on course as planned.

This is disappointing news, but ultimately, is not something the doctors don’t know how to deal with. There are layers and layers of plans and decision trees for every inevitability, and this is no different. The doctors’ confidence at every new surprise gives me confidence that we can face these challenges as they arise, however disappointing they may be.

I got panicked about the uncertains today; I sweat some of the small stuff. But that’s going to drive me mad if I give into it too much. There’s too much big stuff I can’t control or foresee (progressing slow, resisting insulin) to worry about that stuff.

The blood sugars have been good today.

A lot going on in my head, having trouble getting it typed out well. I’ve been finding TV and movies hard and unappealing to follow, and trying to sort my thoughts out here about the things that are bothering me is feeling similarly frustrating right now.

Sisters leave for Israel tomorrow for 10 days. They’ve been a great source of strength, and I will miss them. I am excited for both of their opportunities to go and what they will be doing there, and am happy they have elected not to change their plans. I will be happy when they are back, though.


Home Tonight, Big Tests Tomorrow
Friday December 21st 2007, 2:20 am
Filed under: Leukemia

I got to come home tonight. Been sleeping in own bed for a few hours and will attest to the regenerative powers being better even than the hospital.

Blood sugars still elevated, but at a level that everyone feels safely under control enough for me to be home and not getting dehydrated. Told that some people just have massive insulin resistance during first twenty-eight days and should expect to have to be admitted to hospital as needed. Can deal with this.

My arm is fractured for sure, but the orthopedist said that’s just going to keep happening for a while because of the lack of strength in the bone and the size of the tumor (what used to be a benign bone cyst). We will keep the pain under control (ish) and as chemo progresses, the bone will become strong enough to heal itself and stop fracturing.

Tomorrow is critical Day 15 Bone Marrow Extraction, in which I go in for some patient surgery and we see how well the chemo is effecting my bone marrow. We’re hopeful that the leukemia cells will be down from 80% (when I was diagnosed) to less than 5% in the marrow tomorrow. They said that this will even make the marrow easier to extract because it will be less thick and sticky. I never thought about it like that.

Also some big chemo tomorrow, but all hopefully outpatient barring any complications. Feeling positive.


My arm hurts; good sign?
Thursday December 20th 2007, 3:15 am
Filed under: Leukemia

Having trouble sleeping because my arm hurts. It’s the first day since I was diagnosed that it’s really bothered me. I guess I’ve had weightier things on my mind. Maybe it’s a testament to feeling a bit better overall?

Still in the hospital, probably until at least Friday. Not sure. Just given some morphine, hoping it will help me sleep.

These steroids are still battling it out with my pancreas.

Love all the cancer doctors and nurses here, can’t imagine being anywhere else. They have such confidence, move forward with such plans. Very comforting. I’m at Children’s Hospital, which may seem sort of strange, but for Leukemia, the youth-oriented treatment works better for young adults in their 20s. And, honestly, I can’t complain about being coddled. I can’t imagine a better team of oncologists (both doctors and nurses).

Endocrinology (getting insulin adjusted, etc) is more frustrating. I think for everyone.

Lost over 20 pounds in water before being re-admitted.

Friends coming back into town for the holidays: I want to see you, I appreciate that you want to see me. I don’t know anything beyond that right now. Don’t stop calling just because you don’t hear back; your support means so much.

Messages coming in from friends of my family that I don’t know, people who have seen my videos on the Internet, people I competed with in speech in high school, people I don’t even know, etc: overwhelming. I can’t thank you enough.

Going to try to sleep now.

Much Love.


Back in the hospital
Tuesday December 18th 2007, 11:52 pm
Filed under: Leukemia

I’ve been re-admitted to the hospital. The steroid chemo I’m on is messing with my blood sugar so much that I can’t stay hydrated.

Amy left today. It’s been a rough day. Low spirits.

Thanks for all your calls, emails, messages, etc.

Much love.


I’m home
Monday December 17th 2007, 2:12 pm
Filed under: Leukemia

Hurting, annoyed that the Barry Bonds-like levels of steroids I’m on are making me diabetic. Glad they’re keeping me alive though. Don’t feel well.

Still lots of love. Can’t imagine doing this on my own. Amy here until tomorrow.


Surgery Went Well
Saturday December 15th 2007, 1:44 am
Filed under: Leukemia

Today’s surgery went very well. I got a port put into my head for easy access to my spinal fluid (for both testing and chemo), and the ports in my chest adjusted for easier access. There was also another bone marrow extraction from my hip, which will be a good indicator of how everything is going. Also had three other kinds of chemo today.

Long, full day, but feeling pretty good and might be able to go home tomorrow.

Still cannot fully express how wonderful it has been to hear from all of you. Thank you.