Thursday, February 18, 2010

Me and Barney

A recent episode of How I Met Your Mother chronicled Barney Stinson's attempt to complete The Perfect Week: 7 girls, 7 days, no rejections.

Now I'm going for my own version of The Perfect Week: 5 days, 5 visits to the hospital, a treatment every day.

My week started on Monday with a routine visit to the opthamologist... well, the special transplant opthamologist. This is kind of a hold over from my first transplant because a form of GVHD is dry eyes, so I've been seeing this guy for a while, but I'm also supposed to have a visit with him around Day 100, so we kind of did a double duty normal check up/100 day check up. It was fine, he was happy with my eyes. Just a lot of waiting. That clinic is always super crowded.

Tuesday was my weekly doctor's visit. Again, normal, he's happy with how things are going, and it looks like my graft versus host disease is under control. We tapered the steroids. But I had to get a platelet transfusion because my platelets haven't recovered yet from the mylotarg treatment I had a few weeks ago. Mylotarg bottomed out all of my blood counts, and is the reason I had to take the neupogen and got the fever and had to go into the hospital. Tricky little bugger. But hopefully all of that means that it also got any left over leukemia cells too.

Wednesday I was scheduled to restart ECP. ECP, or extracorporeal photopheresis, is this very cool, very space age treatment for GVHD. Basically, they take out some of your blood, separate the white blood cells, give you the rest of it back, treat the white blood cells with a drug, and then give you the white blood cells back. This treatment somehow causes the body to recognize that GVHD is not a good thing and to shut the process down. I think it's amazingly cool and I feel really lucky to be going to a top-notch transplant hospital that uses ECP so extensively. I've had ECP before and I respond quickly to the treatment, so the hope is that this will stop any current GVHD and prevent further GVHD.

Well, even though I had a platelet transfusion on Tuesday, my platelets weren't high enough on Wednesday to get treated. So I got more platelets.

Thursday (you know, today) I went back for ECP (it's two treatments every other week). My platelets were OK so I could get the treatment. I love the nurses, they are so sweet and we have fun together. They have food, like bagels and popcorn and candies, and they have warm blankets too. There are few things better than a warm blanket!

Tomorrow I'm supposed to go back for another blood draw to see if I need a platelet transfusion. I'm pretty positive that I will, and then I will be the Superbowl of Cancer Outpatient Treatment!

Five days, five hospital visits, five treatments.... fingers crossed for tomorrow! Watch out Barney!

8 comments:

Monique said...

Is Jim Nantz going to be commentating on your week?! I hope it goes well!

Zhu said...

Glad to see you are making your doctors happy - you make us happy too :-D

I had no idea you had to see an ophthalmologist too! You are truly being poked by all kind of doctors, poor girl...

Eye doctors are never happy with my eyes - I have the weirdest eyes ever.

au soleil levant said...

Monique, that is SUCH a good idea. I don't know if I'm clever enough to swing it though, it'll take a little bit of work.

Zhu - Thanks! But weird eyes? What does that mean?

Animesh said...

yay for the good news!
:)

Leesa said...

Hey Mir...


I read the Jim Nantz one first and now I'm reading this ... Good news is great news!! Keep it up, platelets!!
Take care, Leese

Zhu said...

Weird eyes... okay, I can't see out of my left eye. Nobody really knows why but I had a surgery when I was a kid (which didn't help at all). Each time I go see an eye doctor (and I had a few new ones in Canada), we go through the same routine. Cover right eye. Notice I can't see shit. Try to figure out why. Get desperate.

Meanwhile, I'm sitting on the chair, more like "don't worry about it, been there done that". I almost had to comfort my last eye doctor because he really wanted to find out what was wrong with me! :-D

I personally find it funny and it doesn't really bother me because I'm used to it.

au soleil levant said...

Wow that is a weird eye thing. No one can figure out why? That's odd. You say you're used to it but I'm sure it's still difficult to deal with. Have you ever seen a neurologist about it? I'm biased because my dad is a neurologist, but they might have some insight. I'm sure you have many funny stories from different opthamologist visits!

Zhu said...

I do have super funny stories ;-) I'll tell you some later if you behave ;-)

It's most like a physical thing. I.e. apparently I have a mix of astigmatism and hypermetropia in that eye. Because I could barely see out of it as a kid, by the time it was caught, my brain had learned to ignore this eye. This is called amblyopia I believe.

It's not a big deal to me like I said, except I can't see 3D. I also suspect this eye thing was one of the reason learning to drive and being confident took me longer than most people.

But my other eye is good, and few people know that I can't see out of my left eye!