No, we're not talking about whether you are stage 1 (no nodes involved) or stage 2 (nodes involved) -- but rather the stages you go through as you are processing the fact that your doctor has just used the "C" word in relationship to your body.
Like the various stages of grief, not everyone goes through them at the same pace or the same time. But pretty much everyone I've talked to at one time or another has gone through the following stages:
1. Denial -- until they do the biopsy, until they do the lumpectomy, until they get the results back, until they get the results back from the lab far away until until until -- it might not be true. We cling to a lifeline of hope that somehow it won't be true.
2. Fear -- this phase invariably starts around 2 am. You clutch your belly because the abject fear has just hit you. You are terrified, paralyzed, and convinced you are going to die. (Note to self, we are all going to die, its what you do between now and then that matters.)
3. Information addiction -- perhaps its a natural response, but you somehow think that if you just know one more answer, one more piece of information, the fear will go away. (Note to self, it doesn't, it just hides under the bed until the next time you're feeling weak.) At this point, you should avoid the Internet at all costs. With the exception of a few very good sites, it is guaranteed to make that fear jump out from under your mattress and strangle you.
4. Decision shock coupled with analysis paralysis -- There is the moment in every cancer patients life after you've seen the doctors, the specialist, the second opinions, the other survivors -- when you realize that the doctor isn't going to make decisions for you. It's your body, you have to fight like hell to preserve it, and ultimately the decisions are yours and yours alone. This invariably happens when you have reached the information saturation point and you can't possibly hold any more data in your head.
5. Organizational compulsion -- now there's a plan, a routine, a schedule for chemo, for radiation for doctor checkups, for lab work, EKGs etc etc. This is when most of us go out and buy expensive PDAs to keep it all straight. (Note to self: retail therapy does not cure cancer, but it does briefly relieve the pain.)
6. Fear of baldness -- Once you've gotten your treatment underway, you become obsessed by the hair thing. I tried a special shampoo that was supposed to prevent my hair from falling out (it didn't). There's something about the prospect of going bald that is particularly good at releasing those fear demons from under your bed. Looking back, there were a lot of great things about being bald that I failed to appreciate at the time:
- Not having to shave my legs,
- My skin never felt so smooth
- I shaved (so to speak) 15 minutes off my daily routine of doing my hair
- I got to be whatever hair color or hat fashionista my mood dictated at the time.
7. Everything is just peachy
This is the stage where you are used to dealing with the disease, you are done with chemo, doing radiation and YOUR HAIR STARTS TO GROW BACK! This alone is the biggest, most exciting thing to happen in your life. The slightest layer of peach fuzz seems like a full head of hair to you. (note to self, you still look bald as hell.)
8. You've survived, boo hoo
Finally you are done, complete, finis -- no more waiting rooms, no more drips, no more radiation, you are done done done. And that's when the fear demons pop out from under that bed again and attack you with a vengeance. Suddenly, you are on your own again. Your family and friends hear that you're done and assume you're fine. The doctors all wave good bye. And you are all on your own with all of your fears. Don't t panic -- we all feel the same way. That's why Welbutrin was invented. You WILL get over that to.
9. I'm a survivor, now how can I give back
After a year's worth of struggle, you're feeling fine, and you are feeling incredibly grateful to everyone and everything that got you through it. You celebrate your one year anniversary and invariably start thinking about joining a group, working on a committee, or getting involved in a causes. There's just something about being a survivor that makes us do this. (I think it's a secret force they add to the radiation.)
10. The fear is still there, but there's a lock on the door.
The fear never really goes away, but when my doctor asked me last summer "Do I still think about it every day" I had to admit that I didn't. Maybe every other day, maybe less and less. You cry more easily than pre-C, but less than during C. The fear never really goes away, you just learn to keep a lid on it. And then a friend dies, or someone new is diagnosed, and the fear pops up and starts jumping up and down on your bed like a six year old in a hotel room.
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