The Third Line's a Charm

In just a few hours after writing this post I will be laying under a surgeon's knife, having not my first...not my second...but my third tunneled catheter installed in my chest (and that's not even including the port I also had at one time). You can click here to read about my first "tails" or here to see a picture of the second line...or even here to remember how excited I was when the last catheter was removed. Alas, my days of no open wounds and smooth lying tops are about to come to an end again.

The line is a tube that runs into my chest and into one of the main veins connecting to my heart. Here's a helpful diagram:

And here's a song called "Heart on a String" just for the occasion: click here

As opposed to the diagram, my line will have 3 tails at the end, similar to the devices I've had previously. The multiple tails allow the medical staff to have me hooked into a variety of processes all at once. And they just hang down directly out of my chest. Dangling. Creepily. Asking to get infected. Caring for a line is serious business because it opens your body up to infections, but I'm getting to be a semi-pro at this.

"Why?!?" you ask. "Why have this anxiety-inducing, infection-prone, eye sore installed in your chest?" Well, it's a great question and the answer, in a round about way, is buffalo chicken dip.

You see, my graft vs. host disease (GvH) has been flaring up for over a month now. This is when my new donor-given immune system sees the normal parts of my body and "rejects" them as foreign and attacks them. Recently it has effected my scalp, eyes, mouth, skin, and stomach in ways I do not appreciate. My doctor prescribed steroids and put me back on one, then two, immuno-suppressants. Both were a regressive step and I was especially upset at the immuno-suppressants because they will prevent the donor immune system from also fending off any potential new cancer. An even bigger problem is that those drugs didn't simply melt the GvH away.

The doctor told me if there wasn't some concern that the cancer could come back, we'd just amp up the steroids and immuno-suppressants until the GvH disappeared, but there is that worry. So rather than risk leaving my defenses completely compromised we're going to try a rather cutting edge procedure for treating GvH called extracorporeal photopheresis (ECP). Doesn't it just sound expensive?

During ECP one of my new tails will be connected to a machine that will take some of my blood and do magically scientific things to it. More specifically, it will separate out my white blood cells, expose then to a medicine that makes them more sensitive to UV light, then expose them to UV light which will kill some of those undesirable cells causing the GvH, then put the white cells back in with the red, and finally return the blood back to me through a second tail hooked to the machine.

Each round of ECP should take about an hour and a half. Plus the hour round trip drive to the doctor. I will have to go for the procedure twice a week, probably for several months. Like a mini-dialysis routine.

But the payoff comes with Frank's Red Hot. The grown up in me knows this procedure (the tails, the ECP, the whole 9 yards) is necessary so the GvH doesn't continue to attack my body. Beyond my eyes and skin, GvH could also attack my liver or other organs, so it's critical to keep it under control. Many transplant patients die, not from cancer or transplant, but from GvH. But I'll be honest, that's a hollow shell of a responsible person talking. When I go under the knife tomorrow I will be thinking of all the amazing, spicy, flavorful things I'm going to eat when this GvH goes away. Right now my mouth is raw and sore inside. I'm eating very bland foods like mashed potatoes and baked chicken. Which is all well and good.

But did I mention I'm still on the steroids? And steroids make you feel hungry pretty much 100% of the time. Peckish at the very least. So I'm always hungry but can't ever eat very much (even the bland stuff winds up hurting fairly quickly). And so I'll boldy look this latest procedure in the face and say "bring it on..." with a side of salt and vinegar chips, and buffalo chicken strips, and a giant lemonade.