Day 20 - RIP Elizabeth Edwards

 

Before I start my update, I just want to recognize the phenomenal resilience of Elizabeth Edwards.  She was so impressive and amazing and it was just a tragedy yesterday to hear of her death from metastatic breast cancer at the young age of 61.  Her breast cancer was discovered to have returned in 2007 and to have metastasized in her bones, which typically has a pretty grim survival rate.  Here is a link to the Slate article announcing the return of her cancer back in 2007.

http://www.slate.com/id/2162548/

So, to all the people who are like Elizabeth Edwards out there whose breast cancer-related deaths were not publicized in the NY Times and on NPR, I salute you.

My Update: Another MRI biopsy?  Seriously?

I can't believe it has only been 20 days since I first received my diagnosis.  I am exhausted thinking about all the work I have done trying to schedule appointments, get test results, etc.

So, I'm writing this on a relatively bad day since I'm tired and overworked and stressed about getting some certainty back into my life, which is a sisyphean feat.  These are the highs and lows of this whole experience.

I was feeling high on Monday with the knowledge, communicated to me orally by my doctor friend on the inside.  I was so relieved when she gave me the news (negative biopsies!). She didn't really make it clear to me that she was (potentially?) stepping on anyone's toes by giving me this news orally, but apparently, she was.  The process is to wait until the results are in the "system" and then someone "official" would have called me.  As of the end of the day on Monday, I heard nothing. I called my nurse navigator to check in and I apparently blew my friend's cover, which I feel horrible about. She has been nothing but kind and concerned and, to be honest, it was great to get information before it was available to the public. 

So, that was yesterday afternoon.  When I finally did get a call with my official results (which was not until Tuesday afternoon), they indicated that they still wanted to get a biopsy of the third area of concern, so that meant going through the whole process again.  Great. 

So, the update is:  one more biopsy on my right breast will be conducted tomorrow morning at 8:30. The finger crossing needs to start all over again.   My radiologist had indicated that she was "less concerned" about this area, but I think she just wants to make sure she's covering all the bases.   I  hope it turns out to be nothing!

By the way, I'm starting to feel like a pin cushion here. 

In addition to finding out that news, I also find out from my genetic counselor that my insurance has been holidng up the process of finding out my BRCA mutation results.  I am furious!  I was able to call the lab to get them to start to at least run the bloodwork for my test, which meant the "1-2 week waiting clock" was reset yesterday. 

I have a lumpectomy scheduled for next Wednesday.  It would have been nice to have gotten the genetic results  before that, since if they come back positive, they will likely call for a surgery much more extensive than just a lumpectomy.  But, I probably won't have those test results  back before the surgery date (which is a week from today).  So, we'll likely just proceed without the genetic results.  I am still praying they are negative. I really don't want that BRCA gene mutation.   I know people who have the mutation are able to go on to have completely healthy and happy lives, but it would just cause another element of difficulty into my current situation if it comes back positive.

Also, I am starting to get increasingly nervous about my pending surgery / lumpectomy. The reason is that in the surgery, they will be able to extract a tissue sample of my lymph node to determine if this cancer has moved to my lymphatic system.

The research I read today indicated that, since I have not received a diagnosis of inflamed lymph nodes through phsyical exams, I am at a reduced risk for having them be infected at this point in time.  That said, in cases like mine, where the doctors have felt nothing in my lymph nodes, I still have a 30% chance of actually having a positive read for cancer in my lymphatic system.

This makes me incredibly nervous, friends.  I will know within the next 1-2 weeks the true extent of this nasty, nasty tumor, which, by the way, has been acting up lately. I can't wait to get this alien creature out of my right breast.

New Schedule

• Third MRI biopsy scheduled for tomorrow (Thursday). Hopefully results will be NEGATIVE and will be in by Friday.
• More discussions with fertility doctors tomorrow following my biopsy
• Genetic mutation test clock restarted yesterday (Tuesday) for results 1-2 weeks from then.
• Surgery still scheduled for next Wednesday (one week from today!) to get this horrible lump out of my body.  I will also find out shortly after surgery the status of my lymph nodes.

Book Recommendation

I haven't actually read this book yet but I saw the author interviewed on Charlie Rose last night and I can't wait to read it (I think it's going to be a Christmas present to me from someone near and dear). It's by one Dr. Siddhartha Mukherjee, who was a brilliant guest on the Charlie Rose show and is a true genius.

The name of the book is: "The Emperor of All Maladies: A Biography of Cancer" -- here's his website.
http://authors.simonandschuster.com/Siddhartha-Mukherjee/49784674

Okay.  Signing off for now.

- Peace and love and joy and health.