Friday, July 6, 2012

A Tale of Two Cities

Last Wednesday I had one of my normal appointments with my oncologist, Dr. Grant. These began as once a week immediately after discharge from the hospital but now are more spread out, usually once every 3-4 weeks. In late May I had a CT scan to try and determine if the fungal infection I acquired during my first round of chemotherapy, and the one responsible for me needing to drive back to Boston with Kym and Fumos just days before my sister's wedding due to never-ending fevers, and the one responsible for making me take three almond-shaped difficult to swallow pills for 7 months had finally cleared.

Well wouldn't you know? It was inconclusive.


So last Wednesday I woke up to find myself faced with another CT scan. I used to fear the amount of radiation you get from an X-Ray. Then I got 7 20-minute doses of enough radiation to knock out hundreds of thousands of cells that I'd been unconsciously building for the last quarter-century. Now, a CT scan doesn't seem so bad. I was scheduled for this new one and then scheduled to meet with an infectious disease doctor. I'll call him Dr. McFly.

But this particular morning I woke up to a text message from a good friend. One who I honestly owe my life to. When Kym first discovered in early October 2011 that I had large lymph nodes in my armpits (and thus destroying the "clogged duct" hypothesis my PCP had come up with hours earlier) I admit I was a little freaked out, and a little excited too. Anyone who's read this blog since I started writing or has gone back to read stuff will find that for someone who majored in Film and Video, I have a decent understanding of what is going on with regards to my immune system. I've always found it fascinating (well, since I was 9... 4th grade science class.. you know how it is) and I've spent a good deal of my free time doing my own research, taking classes, and just reading a ton of stuff. Well, I was faced with my immune system acting funny and I was totally into it at the time.

That night, I talked to my friend online and as she worked at a PCP's office in NYC, she set me up with an appointment that very Monday (we were talking very late on a Saturday night).

Anyway, I just want you all to know it's not every day you can be so thankful to someone outside of your family due to the fact that you're still alive. She's a great person, and I'll call her Goldberry.

Lord of the Rings wooooooooo!

Anyway, Goldberry suffers from something much worse than acute monocytic leukemia. Though not life threatening (to my knowledge, with modern medicine), her disease is awful and will never go away on its own. Yes, I could go into my next appointment and find the cancer is back, that cancer might not respond to a new round of chemo, and I am terrifyingly aware that it could kill me. However, I find myself lucky that the one cancer that decided to play games with my heart (I told it to quit!) is in fact curable.

My point is, that on top of the fact that she got me to a doctor so quickly, she has also opened up to me a lot in the past few months, and I've opened up a lot to her. We talk a lot about medicine and our experiences dealing with a lot of needles and bags of goo.

"Getting a bunch of infusions in the oncology suite at Weill Cornell. It's surprisingly crowded. Everyone is nice but man, bodies suck."

Today happened to be the first day since my inpatient stay that I'd be getting an infusion.

Around 1:00pm I headed over to the  hospital. I needed to get a blood draw first, then a CT scan, then grab some food, then meet with Dr.s Grant and McFly, then get an infusion of IgG.

Quick background. IgG (Immunoglobulin G) is an antibody in your blood secreted by plasma cells (lymphoid line, mature in the bone marrow) mainly to fight viral infection. However they also help with fighting bacteria, parasites, and neutralizing toxins. Of the five types of Ig, (E, A, G, D, M), G is the most common, representing an overwhelming 75% of all of your antibodies. They are very large Y-shaped molecules that can can attach to antigens with one end and talk to other immune cells with the other.

I first check in to the radiology desk. Fill out a quick form with my medications and allergies and text Goldberry back.

"They have weekly meditation sessions, an artist in residence, and just gave me a milkshake. I'd rather be anywhere else, but <3 Weill Cornell."

"Well if we were truly made in god's image, it's no wonder he went off on his own... he'd be the ass end of Olympus for sure."

"Ha. He gave us his only son, Broclergaard! What more do you want! Hahaha"

"Haha well I guess I can't argue with that... Glad you like your milkshake :)"

Some time around now, I was called back to a quick pow-wow with a radiologist. We went through the procedure and talked about my medications. There was a bit of confusion, because I didn't need any radioactive contrast (goo) for the CT scan, but I still needed to keep my IV in after the blood draw as I was scheduled for the IgG later. We got it figured out and I went back for the blood draw.

Mmm. Blood is so tasty and good. That's what mosquitoes say... if they could talk. Sadly they can't and I am left to assume. Did you know that only females suck blood? And on top of that, they don't even eat it. They feed it to their young. I don't actually know if that's true so for all you high school students doing a 3-5pg research paper on mosquitoes with a minimum of 5 sources, one of which has to be printed material, please do not use me as a source for mosquito habits. I recommend Wikipedia and a book called "Mosquitoes and Me: A Memoir of Sir William Clay." But seriously.. don't use either one of those either.

Another text from Goldberry.

"Ha. Was feeling better avoiding dairy and gluten, but that's shot today. Milkshake delicious but feeling ugh. Worth it!"

"Then I am both happy and sad for you! I'll be a hospital guest for a few hours yet... CT scan, dr. appt, infusion... First infusion since February."

I headed back for my CT scan. If you've never gotten a CT scan, think Apollo 13 + really smart people.

Ok... so.. just think Apollo 13.

It kinda feels like you're in a space ship. You enter a Future!-looking room and sit on a white bed. They put a pillow under your knees to make it more comfortable, and then send you through a massive rotating machine. The computer lady-voice speaks up...

"Take a deep breath... and hold it"


"You may breathe normally."

This repeats a few times and I'm no my way! I'm hungry and ready for lunch, so I head to the third floor for a quick meal. Only thing is, my diet is fairly limited when it comes to prepared food. I shouldn't eat anything that's been sitting out. I definitely can't eat something from the food-bar. I can't trust the deli.. those are off limits until at least January 2013. I walk in circles looking for something both tasty and good, as well as safe.

"Aha!" you say, "you have an IV line in! You can drink your own blood!"

But sadly the phrase "Mmm, blood is tasty and good" only applies to my speculation about mosquito larva.

But, to the east! There is the pizza man! He's taken a cheese pizza right out of the oven and set it down. I quickly rush over and grab the first slice before and normal people can soil it for me. I also ask that a fellow behind the counter deep fry some potato slices for me in Arby's fashion. An angry man yelled at the fellow moments before so I was extra friendly.

Soon I had my pizza and curly fry meal ready to go. It was delicious. Kym met me there.

Let us skip ahead a bit.

I found myself face to face with Dr. Grant. We went over meds. My blood pressure was something like 105 over 60, so he took me off the amlodipine I was on. One med down. He looked in my ears and in my eyes. Listened to my chest and my heart. He checked my skin and my mouth and my blood results looked fine (except for a low IgG count). We talked a bit about medical stuff I cannot remember, and then he was off to look for Dr. McFly. They both came back and talked about my CT scan. It looked clear, and the anomaly they noticed last time that resulted in it being inconclusive seemed to have resolved itself. The result?

I am no longer taking fluconozole. And it feels really good. You ever feel really good before? That's how it felt. Really good.

Ha. I'm smiling now even writing about it again.

No more stupid almond shaped pills for me! Bulwyf is above such pills when he is not infected with something such pills can prevent and destroy!

Now that the appt was over, I had but one more hour to give. The IgG infusion. Well, I was mistaken and it turned out to be longer than an hour. But they pre-medicated me with Tylenol and benadryl and that put me into a light slumber pretty quickly.

"Yay! I got potassium, magnesium, and iron. Go cyborgs!"


I almost needed an infusion of magnesium a few months ago. One of my meds, tacrolimus (found from a fungus that grows in Japanese soil, go Science!) eats up magnesium like mad and so I am on mag pills. So far, 2 400mg pills 4 times a day seems to be enough to prevent an infusion. I felt especially bad for the potassium infusion. I got a lot of those in the hospital, but most were shot directly into my heart. The ones that go into your veins hurt worse than a... I don't know, it's late, but they hurt a lot. The potassium just burns as it goes in and they usually need to dilute it with saline.

After my infusion of IgG, Kym and I headed back to the apt to see Bill. Both Kym and Bill are doing quite well and I am happy to be here with them.

Has anyone actually made it this far? I feel like I drifted with my thoughts a few times...

1 comment:

Anonymous said...

Not only made it this far, am completlely AMAZED at how you have handled yourself through this whole situation. It is so good to hear you are improving. Can't wait to hear when you get the all clear :-)