Oncology update

I proposed a support group for students like me--not that I'm aware of any. This is the e-mail I sent to the faculty, to let them know I'd done so. [The actual proposal followed.]

It serves as a reasonable update, so I'm posting it here.

Hi faculty,

I won't make a habit of crashing your list. I'm trying to start a support resource, both for myself and others. I want you to know about it, in case issues come up, say with your advisees. I sent this out to the student list earlier this afternoon.

How am I doing on treatment? My hair's thinning, but I don't think anyone really notices yet but me. I'm losing weight, but I needed to. The only thing I can really complain about is utter, debilitating exhaustion. I sleep--and nap--but it's never enough. Academically I have no business being here--I don't have those capabilities anymore. (Imagine being up all night--for months--and then concentrating, reading or writing. That's my brain right now.) But my health insurance is tied to school.

One of the frustrating things is being told constantly that I look great--and knowing that "great" is very relative. I can have a conversation, though if I'm interrupted I'll lose my thought completely. I can write a reflection, but it takes me all day. I can do heart-work at one in the morning (my field ed is at the Night Ministry); I'm always that tired anyway. The irony is that if I went off the drug, I'd be mentally and physically capable again within two weeks. But that's not what I need to do.

(I just came from an oncology appointment. He said that interferon may be the most toxic drug they give. And he said I'm doing fine. Which apparently means, I can get out of bed. I'm not depressed, and I'm only slightly nauseous. There's nothing you can do for fatigue, but sleep. If I were anemic, they'd transfuse me. He said my hemoglobin is better than his.)

Oh, and while none of you have mentioned my behavior in chapel, I know it's noticeable. I rarely stand through the Eucharistic Prayer anymore, because it takes too much concentration. While I can walk, standing still is exhausting. I pray sitting down.

While I have you: Every one of you has had my back, since I was diagnosed in April. I need your support, and I know that I have it in all kinds of ways. I can't thank you enough.

peace,
Kirstin