November 5, 2013


Hope is a dangerous thing.  It feels difficult to let myself be hopeful; as if giving in to hope means further devastation down the road.  I have this sense of relief over the last few days.  I hadn't realized just how much I was holding my breath, waiting for the results of all the scans Mad had.  And we got good results.  Not spectacular, but good, heading in the right direction, positive.  I should be joyful, I should be relieved, and I am those things, but there is also this sense that I can't let my guard down.  I can't ever let my guard down.  I can't ever relax about this.  Shortly after Madeleine had a big surgery last winter, when things really started to go wrong (but we didn't know it then) I got a call from her doctor to ask if I wanted them to do a post-op MRI.  I don't know why this was my decision, it's never been my decision before, but she was debating about doing one because Madeleine appeared to be doing so well.  She had recovered well from surgery, she had good strength, a decent appetite.  It seemed that the surgery was successful, that the tumor had been debulked, the biopsy came back negative (which is one of the craziest parts of this whole story.  If only they had biopsied a second site as originally planned...).  Everything was going well.  And I said No.  I didn't think another MRI was necessary.  I didn't want to drive to Albuquerque.  I said no.  I let my guard down.  I chose to believe that everything was fine.  I know this isn't my fault, but I can't help the "what-ifs." 

The CT, MIBG, and MRI scans all show that the tumor has decreased.  The MIBG actually is more avid (avidity = active tumor), in one spot, the original tumor in her lower spine.  That is a strange result, and no one is sure why that has happened.  Her bone marrow shows trace amounts of disease.  before it was around 5%, and now we are closer to zero.  So, a much better result, but still not the all-clear that we were hoping for.  The part of the tumor that had grown up her spine into her chest and near her heart may be completely gone.  There is one spot in her thorax that appears calcified, and if that is the case then it is dead tissue.  Her VMA/HVA are now at the level that they were a year ago.  They are in the mid-20's.  In May, when she relapsed, they were over 100.  At this point the tumor may be at the size that it was a year ago.  Essentially we are at the point where we were a year ago, when everything was fine.  Except (and this is a big except), we now know that this tumor is not stable, also except she has had a ton of scary drugs to kill this thing.  Nevertheless we are pleased with the results of the MIBG treatment.  Our lives are now in the hands of UCSF who will be receiving all of her scans today and deciding what the next treatment will be.  They may want us there as early as next week.


Anonymous said...

DO NOT blame yourself for not catching this. It is in no way your fault. Even if it had been caught earlier, the result would most likely have been the same. You have done and are doing everything you possibly can. DO NOT beat yourself up over this. This is an order from Mom, who still gets to order you around every now and then!

JT said...

I like "Mom's" comment!
Here's my other 2 cents. None of us knows our outcome. We ALL have expiration dates...just not printed on us. Life/death are rarely what or when we expect. No one Knows, but "God"---or the universal all-knower, whatever you express this as. It is absolutely normal for you to feel anxious----your perspective has been shaped by some heavy stuff. One day, one moment at a time is what we have---it is up to us to make the best of what we get----YOU ARE DOING SO WELL WITH THIS! Courage and love to you in this moment!