Saturday, April 21, 2012


The other day, I was reading a plea for help on the Inspire website and something occurred to me.  We are our own worst enemies.  Often, when we are facing something we know will take a lot of work, or is scary in some way, or that we really don't want to do, we ask for help....then immediately shoot down the suggestions which come our way.

We through up roadblocks to our own progress.  I think it is probably human nature, but we can do this to excess and to the detriment of our lives.

We need to re-examine.  Look at this sign again..the first thing you see is "Bridge Closed to Thru Traffic"...but just below is a "detour" sign.  We can get around this....we can go forward, although it may not be the path that we originally were thinking of.  The path may not be the easiest, it may not be the most direct, nor may it be as scenic....but it can be done....and the best thing to do is to take it one small step at a time.

Monday, April 16, 2012

The World Doesn't Understand Stage IV diagnosis

This evening, I heard something and was quite stunned.  Ryan O'Neil was diagnosed with Stage IV prostate cancer.  His comment was "I'm so grateful they caught it early."  Early? Ryan, you need to get your ears cleaned out.  Stage IV is LATE STAGE means you will never be free if you are lucky enough to survive it for 5 years and only 10% do.

There was a woman on the Inspire MBC site (Metastatic Breast Cancer) who said that a woman who was a close friend of hers commented "Oh, are you still fighting that? I thought you were over it."  Just because we have hair, doesn't mean we are out of treatment, nor that we have beaten the disease back to "No Evidence of Disease" (NED).  It means we usually have a monkey on our back, although I refuse to let this monkey be of any great weight.

It means that we risk bankrupting our families, or draining the money intended for college and retirement.

It means that when the NBCC says that patients should receive no more than 4 treatments because it doesn't prolong life that much, that we live in fear that our insurance companies will not allow further treatments, no matter how well we are doing or physically means that we live in fear of not being covered at all because we have a pre-exisiting condition (something that "Obamacare" would prevent if it were allowed to stay in place, but that portion won't come into effect until 2014...leaving those of us who are not in the top 1% scared that we won't get the treatment which would help or that we need just because we are not wealthy.

It means that we can be on a drug, but have the cancer mutate so that drug is no longer effective.  Then, we wait and hope that something else will work.  It means that those of us who were diagnosed back in the dark ages and don't have fresh tissue samples can't be tested to see how effective a drug might be before destroying our nerve endings trying it to see if we can beat it back.

It means that people say stupid stuff to you like "Well, insurance companies have the right to pull the plug, just how far are you going to go and take these drugs?"  Well, I'm standing here in the grocery store talking to you....and if you really believe that, then you're telling me that my life isn't worth living or saving....and I wonder how you would feel if the tables were turned.

Monday, April 2, 2012

Mind Games

I'm kind of  in a fog..For one thing, I'm tired from too much stimulation and walking at the SAQA conference.

The second thing is I'm falling prey to something really common for a cancer patient.  On Tuesday, my oncologist drew my blood for the regular routine tests as well as my tumor markers.  He said that he'd call me on Friday with the results.  I gave him my cell phone number explaining that I was gong to be in Philadelphia for most of the week.

He didn't call my cell phone.  No messages.  He didn't call home either.  Now, part of me says "Oh, the results just didn't get back in because you were there late on a  Tuesday afternoon and perhaps there wasn't enough in your "batch." (they hold them and send them in in batches of I think 50 or so).  The other part of me starts to panic and say "he didn't call you because he has bad news and he didn't want to upset you over the weekend."

Unfortunately, he doesn't work on Mondays, so I didn't get a call today either.

Waiting causes you to play all sorts of mind games.  YUCK.