Guilt and Paranoia

Last week, I was reading the editorial in the latest issue of Touched By Cancer. Mike McDonald wrote about being cancer-free 14 years. He said that when his oncologist told him to go live a normal life, he didn't mention that paranoia would be part of the new normal. Most recently, he worried about a mole that became sore and irritated. As it turned out, the irritation was caused by seatbelt friction during a long drive on vacation. The mole is benign.

I haven't had cancer very long, but I can relate!  Some examples -

• Oh no, that lymph node that was swollen during tax season is swollen again. What does that mean?
• Oh no, a new lymph node is swollen. What if it's an indication of another type of cancer? After all, there are people who get diagnosed with more than one kind of cancer at the same time.
• Oh look, my ankles are swollen. Are my blood counts out of whack again?
• These jeans are loose today; is it because I ate a salad yesterday or because I'm anemic again?
• And then there's the ever present knowledge that some patients stop responding to the medication after a time. It's like a hammer hanging over my head, waiting to fall. 

I don't dwell on all the things that could go wrong. Today's trouble is enough for today.  But those things sometimes run through my mind when I'm lying in bed at night or driving by myself.

I think I also have a form of survivor's guilt. Most people with cancer have to have chemo that makes them sick and bald; I had 5 days of very mild chemo and I've had only minimal side effects from the medicine I'm on now.  I have friends with chronic illnesses who have chronic pain; I didn't even realize I was sick until I was diagnosed. I had a lot of achiness before I was diagnosed, but very little actual pain. I don't want to have pain or nausea or baldness or other symptoms, but I feel these weird emotions about not having them.

Edited three days later:

I haven't posted a link to this post on facebook yet. I wrote it out, but verbalizing these emotions make me feel as if I'm calling doom down on myself. If I admit that I feel guilty about having such mild symptoms of a very serious illness, maybe my symptoms will get worse or I'll stop responding to my medication. Then on Thursday, I began feeling worse. I couldn't concentrate at work, I got a headache, and I became nauseous. Friday morning, I felt better, but by afternoon, I was feeling tired again. Not a normal kind of tired, but the way I felt before I was diagnosed.  I called the doctor's office and got my next appointment moved from Friday to Tuesday. I worried that my worst fears were coming to pass and my blood counts are out of whack again.

Today is Saturday, and I'm feeling normal again (and quite relieved!). I took Katie to her dance class and I've done some laundry, and I don't feel exhausted. Over time, I'm sure I'll figure out that I will have good days and bad days, and it doesn't mean the leukemia's getting worse. I'm sure I'll have some fluctuations in my blood counts and pcr, but every fluctuation won't mean that the cancer is going to spiral out of control. But for now, this is all new, and I don't know what is within the bounds of "normal" and what things I should be concerned about.