Thursday, June 20, 2013

Things I Wish I Hadn't Had to Learn

Three people I know have  received cancer diagnoses this week. All seem to be doing well, I'm happy to say.  

But a diagnosis changes all sorts of things to varying degrees. The disease will always be with me, in the background at best. I'll always be Stage I, the surgeon says, unless it gets worse, even though there's no sign of cancer in my body. 

Back in October, I got the official diagnosis by phone while working the presidential debate at Hofstra, and though not surprised, I was still shocked.  If that makes sense. I was sure it was cancer already, but hearing the surgeon say, "It IS cancer" is still stunning. I don't even know how to describe my initial response, a mix of calm, dread, recognition that everything going forward would be different. There used to be a funny line bit that circulated through the newspaper world, where reporters would try to sneak in the line "It was as if an occult hand had…" And that's what it felt like. Someone reached down, lifted me out of the traffic lane I was in and plopped me down on another road that others weren't traveling.

After surgery, with mostly good news and a strange sense that I could beat anything (the endorphins, apparently), reality intruded in the form of  getting dragged down by treatment that, though now over, quite literally affects me to this very day and may bring more surprises as I go through life. 

But if you're dealing with health crises, I have a few tips. You've read them elsewhere but they can't be repeated enough.
  • Get used to taking your clothes off.
  • No one's experiences are exactly like yours. Listen to what others say but don't absorb all of it or assume they'll happen to you. Things WILL happen to you; they're just likely to be a little different or happen at different times. The biggest shock after the diagnosis was how much I didn't know about cancer and its many many variables and I've got a version that the surgeon says is boring. Which when it comes to medicine is a good thing. You don't want to be a case study. But listen carefully--you could learn a lot from others or at least to know if something  could be wrong or is so different from others that it's important. 
  • Don't be surprised if people look as if they're prepared to start planning your funeral when you tell them you have cancer. I took to starting a sentence with "But this has a great outcome!" before explaining my absence or inability to get to something they wanted me to do. 
  • Take someone with you to the doctor. I have been stunned more than once to realize I hadn't heard him fully or had questions later that I should have asked. A second person can help.
  • Write everything down--appointment times, prescription info, test results. You may never need your notes, but then again, you might. This can also be hugely helpful if the treatment impairs your memory. 
  • Don't be surprised if you feel worse when treatment ends.  First,  it could be over because you've reached the maximum dosage, and those effects don't immediately fade away.  Second, you could feel as if you're no longer fighting. 
  • Listen to your body. If you're tired after radiation or other treatment, your body won't wait for you to do 10 other things before you consent to a nap. It's telling you now: hit the sack. 
  • Side effects can have side effects.   
  • You may feel as if you're falling through the cracks between specialists since no one doc seems to be in charge of everything. Surprisingly, not even the oncologist. And there's a tendency of each to push a problem off to the next one if     it doesn't have its origins in that individual's speciality. Edema? Not the fault of the surgeon after a ultrasound. Faintness during treatment? Not the oncologist's area; maybe the radiologist. It's disconcerting at first.
  • Read up on the disease, but don't believe everything you read. And while no doubt there are good websites or books advising alternative treatments, consider the source. Someone whose cousin got better after eating black licorice while dancing in the rain may not be the best source of advice. Stick with the stuff that has some checkable stats or at least some common sense to it.  Watch for everything; assume nothing. 
  • But read those stats carefully. Because even a diagnosis, such as mine, that says "90 percent survival rate at 10 years" comes with a few asterisks.

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