Wednesday, April 4, 2012

Step onto the Rollercoast, Everyone!

I debated about posting before Friday's appointment and originally decided not to update until I saw Dr. R, because he is the ultimate decision maker. But enough people called or otherwise checked in that I figured you all might as well know what has been going on since Monday.

First, you should know that immediately following my ultrasound I called Dr. R's office and left a message with his Physician's Assistant. I am going to call her Avery, because we are pretty much BFFs by now so she needs a blog name. I called because the idea of waiting until Friday without any other info or even knowing how worried I needed to be was overwhelming. So, I called and gave her a brief rundown of what Dr. U had said during my ultrasound.

And then I broke down and cried on her voicemail.

And because apparently everyone in Dr. R's office is amazing, she called me at 8:15 the next morning. She promised to hunt down my ultrasound report and get back to me once she was able to go over it. She then called back every couple of hours to check in with me until she had all the information she needed and we could go over the results more in depth.

Basically, she didn't really say anything much different that what Dr. U said - but she was much more reassuring about the eventual outcome. She also said that we needed to get back my blood test results before we went any further. We tracked them down (they'd been sent off site to another lab) and she promised to call today once she received the faxed results.

The reason I'm having blood tests, along with the CT scans, every three months is to monitor the levels of a protein called "CA-125". CA-125 is a tumor marker - essentially, its something that can indicate the presence of cancer in the body. Increased levels of CA-125 can indicate the presence of ovarian cancer. The problem is that testing for CA-125 is not a definite answer, only 80% of people with ovarian cancer have elevated levels. And other things can cause elevated levels - endometreosis, pancreatitis, pregnancy, a few other types of cancer, and then some. So overall, its not solid enough to be given as a diagnostic test - but it can provide more information if there are other signs of recurrence.

Today Avery called back with my results - my CA-125 level was 11.

I had to ask what the normal range was and she explained that anything under 30 is considered normal. Because I knew enough about the test's downfalls, I asked if we had any kind of baseline from back when I actually had cancer in my body. Avery had to search back through my file until she found all the blood tests that were run at the first hospital after my first surgery. Finally, she found that they had run the test way back in November.

My levels back then were over 200.

Hearing that number initially made my stomach turn. It brought me right back to the feeling that I had in the minutes, hours, and days after my initial diagnosis. The feeling of "How can I be so sick when I feel fine?". Its is very unsettling to realize that your body can be full of all kinds of signs that something is wrong...but never reveal them. Its a terrible feeling and I didn't enjoy reliving it today.

But then I felt relief. Because at least now I know that my body has produced this indicator in the past and will hopefully do it again in the future. And the fact that it isn't demonstrating it right now is reassuring. Avery agreed that it was a good sign and that hopefully it won't change anytime soon.

(It also reminded me of how very lucky blessed I was back in November that my ovary ruptured and gave such an obvious signal that something was very wrong.)

So, that is where we are tonight. Not really much closer to any real answer - but with more positive information than negative it seems right now. So, again we wait for my appointment with Dr. R to see how we will proceed forward.

Much love back to all of you, who have shown so much love toward me...


  1. thinking about you and sending love

  2. Thinking of you! Thanks for the update, hang in there!


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