Wednesday, August 12, 2009

My normal - living with uncertainty

We all live with some uncertainty. None of us know what tomorrow will bring. Recent studies have shown that it is "uncertainty" that makes us anxious and depressed. Uncertainty, for example, about the economy, the stock market, job security, etc., is really what gets to us. Having a plan and knowledge about the future is what can calm us down.

For the past 9 months, I have been living with "known uncertainty". Starting in December of 2008, doctors at UCSF Medical Center suspected that I had a tumor somewhere in my abdomen. They thought, maybe stomach, liver, and possibly, but unlikely, in my pancreas. I was sure they were wrong. I felt fine, looked OK, was swimming fast, my energy was could I possibly have a tumor, particularly where they were looking?

Since the days of my first scan on December 9 & 10, I have undergone 9 procedures. I went to sleep every night wondering if there was even an outside chance that they might be right. My oncologist at UCSF, basically said to me, "I believe you have cancer until I can prove that you don't". My response to her was, "I believe I don't have cancer until you can prove that I do". I suppose that was some variation of "seeing the glass half-full or half-empty, no?

Following the first set of scans in December, each subsequent test turned up negative, except for that very first one that nagged at the oncologist and the UCSF Tumor Board. A repeat of the December scan in April(called an octreotide scan) turned our uncertainty into certainty, kind of. We were now, certain that there was, in fact, a tumor in my abdomen. But then, the uncertainty began again. Where was the tumor? What was the tumor? More questions, more uncertainty.

In April, it was determined that their suspicion was correct. I had a neuroendocrine pancreatic tumor. As I have explained earlier, this is not typical pancreatic cancer - this is good. This is a rare tumor (same thing that Steve Jobs had) - that will, most likely, not kill me.

The plan is for my surgeon at Stanford University Medical Center (Steven Jobs' surgeon) to "enucleate" the tumor - this means he will just remove the tumor and preserve my other body parts. He is going to try his best to NOT preform a "Whipple Procedure", even though I have signed a waiver that this is a possibility. More uncertainty.
So, my "normal" has been that I have been living with a great deal of uncertainty for the past 9 months. First, wondering why I was having so many tests, and thinking for sure that I was absolutely fine. Then in April (on the 20th, to be exact), I received a phone call - from my oncologist's nurse - on my cell phone, while driving - informing me that I had cancer. Now, how is that for receiving some bad news? Then we had to figure out what the treatment would be. Surgery. Where would the surgery be? New York, Boston, SF, LA, or Palo Alto? Who would the surgeon be....and on and on.

I'm actually do OK. Better than would be expected for someone living with so much uncertainty. The nights are the toughest. Keeping busy all day is great. Richard, and my family and friends have gotten me through this (as if they aren't living with a certain amount of uncertainty themselves!). My surgery is one week from today, on August 20th. This will be the toughest week, but I'll get through it. I can't wait for it to be over. Getting it over with has to be better than the uncertainty that I've been living with for the past 9 months.


  1. I know the uncertainty can feel so hard, and it takes so much trust to stay grounded in the present. I hope you can take it one day (or hour or moment) at a time, this week and in the weeks following surgery, knowing that you're strong and resilient and will come through this even stronger. My thoughts and prayers are with you.

  2. Susan,
    Not only are you strong, beautiful, and incredibly courageous. You are also a wonderful writer. I am thinking of you many times each day. Sending you love and wishes for a speedy, easy, successful surgery and recovery.
    Diane M.

  3. I love your writing, even though I hate the topic. I'm sending good thoughts and pulling for you every day. I'll be thinking of you on Thursday. XO laura (mark and max too!)