Wednesday, November 20, 2013

Feeling Not Worthy

Quick update before I get to meatier subjects: I'm off my crutches and will see the orthopedist the first week of December to check my range of motion and strength to determine if I need some physical therapy.  I've been on this new estrogen-blocker for about 5-6 weeks now for my lymph nodes.  We don't know yet if it's working, but the side effects are definitely kicking in.  My bones ache a bit, but it's nothing some ibuprofen doesn't handle for me, so its completely manageable.  

At my last oncologist visit, about 2 weeks ago, my liver numbers looked good still, but my tumor markers had taken a jump up, quite a jump.  There is a possible good reason this would happen, and a possible bad reason.  We won't know which reason is the reality until my next blood test the first week of December.  

In the meantime... :)

I've had some covert operations going on on my behalf out there in the world, and I can now share with everyone what's going on.  I mentioned in my last post that about six weeks ago I mentioned a drug to my doc and he thought it was a great idea for me, but it wouldn't have FDA approval until the end of 2014, so we could talk about it then.  It's in clinical trial phases but is showing such good promises for people like me (estrogen-positive breast cancer) that the FDA has put it on the fast-track.  Yes, the fast-track means it won't be approved until the end of 2014.  In clinical trials, this drug (called Palbociclib) is showing that it might be able to TRIPLE the length of time metastatic breast cancer patients have before they have a progression.  It's goal isn't to get rid of the cancer ... it's to stop it from growing.  To freeze it in it's tracks.  And, because it isn't a chemotherapy (which is basically dumping poison in your body to kill things), there are very few side effects.  It just blocks a certain protein that is part of the create-more-cancer process.

On my behalf, my doc applied directly to Pfizer for what's called Compassionate Care use of the drug. This is a way of saying that he thinks the drug would benefit me, other drugs aren't working so well, and could we please have it early even though it's not approved?  Let me be clear ... THINGS ARE NOT AS DIRE AS THAT WHOLE THINGS MAKES IT SEEM.  Truly.  I don't want anyone panicking!!!  Could I smile like this if things were dire?  
We also have a family friend (a stranger to me) who knew someone at Pfizer and made a call to support my doctor's request.  

I got the call about 36 hours ago that I've been approved by Pfizer and will receive the drug. The details and timeline are being worked out, but the drug will be free.  I'm overwhelmed emotionally and not sure what to think intellectually.  The fact that my doc went above-and-beyond for me, and that this stranger made this phone call for me, touch my heart.  I'm getting choked up just typing this.  It's beautiful that there is that much generosity in the world, in people's hearts.   

Also, I received a call from a substitute teacher and family friend at Rory's school yesterday (Ro loves her!).  Out of the blue.  She just wanted to see if I was doing alright and wanted Rory to know that if she ever needed anyone to talk to, both she and her husband (another sub Rory loves) were always there for Ro.  For us.  For anything.  Her demonstration of love for my little kiddo made me feel like the Grinch when his heart grows three sizes.  

In summary, I'm not feeling worthy.  I'm not having a pity party or anything, just a bit overwhelmed by the love and support that has come our way this week.  I'm so completely thankful for it.  And, since I can't possibly write something this long without a bit of comedy, here you go:




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