Friday, September 28, 2012

Struggling for air

Yesterday was not our favorite day.  We know now not to build up false hopes, but we were feeling pretty confident about the EPOCH.  Andrew has been feeling good (despite the low blood counts) and we were so encouraged by the post-ICE scan. I anticipated that Dr. Z would send us back for another round, but that it would be slowly working.  We were totally unprepared for "no change".  No Change!  After a 96 hour infusion!  Dr. Z. put the 2 PET scans up side by side and they were indistinguishable.

Before the EPOCH, DR. Z had discussed 2 theories -- that these are 2 different cancers, or that it's 1 cancer that needs a good, long chemo bath.  After consulting with the tumor board, Dr. Z. said "over 50 years of combined experience makes us believe that it's one cancer", so let's give it a bath.  Well, it appears that they made the wrong guess, and now we move to Door #2 -- 2 separate cancers.   Exhale.

I understand that doctors are not infallible gods. I do. I understand that this is a tricky cancer.  But 4 different institutions, scores of doctors and pathologists, and no one can figure this out after an entire year?  Meanwhile, Andrew has had to endure round after round of chemo, six radiation-filled scans (with more on the horizon), not to mention the countless transfusions and drugs.  Sorry to vent, but can somebody please unravel this soon!  As Dr. W. said to Andrew the other day -- "at this point there's no protocol -- you just try everything you have." Exhale.

The wrinkle in all of this is that Dr. Liu, way back at Westchester Med, last January, said that he suspected it was 2 cancers.  I believe his exact words were "it's almost like you have 2 different cancers."  !   But we were forced by the insurance company to leave Westchester, and I'm trying not to make myself crazy by imagining all the months of treatments Andrew might have been saved had we been allowed to continue there. Or if I had been tough enough to get him into Sloan at the very beginning.  But he was so desperately sick then and we were terrified.  Dr. Liu saved his life by making a series of really aggressive treatment decisions. After being informed that Westchester was no longer in the picture, we had only a few days to figure out how to keep him on his treatment schedule. During Christmas week!  Breathe, breathe.  Anyway, that was then, this is now.

So.  Dr. Z has ordered a needle biopsy of a node in his neck sometime this week-- thank god it's not another surgical biopsy -- I think Andrew would have thrown in the towel right there.  They will test it a thousand different ways and hopefully, someone will know what it is.  And maybe they'll know how to treat it.

And that's all for now.


  1. Linda and Andrew, my heart aches at the dire frustration and countless decisions, unending uncertainty, and physical and emotional ups and downs you both have endured this past year. It seems so unfair. I can't begin to imagine this unwelcomed ride you have been on. Continue to know that old classmates and friends, family and loved ones, AND God, continue to hold you close.

  2. Dear Mr Andrew and Miss Linda: You will continue to find the strength. YOU are mad now and that is a good thing & don't you ever, ever feel guilt.

    There's no change. Well, in my mind, that means you've stopped it.

    You say Andrew is feeling good so TAKE this time to step back and have some fun.

    You are so good at keeping us all updated...well, I want you to get selfish and cherish this beautiful time in all of life. Yours, Andrew, Mr Ewan and Mr Jack. Hugs and sloppy kisses. Sue

  3. Don't ever apologize for venting. Keeping it in will destroy you. Thank you for sharing. There is not much anyone can do for you, but we can listen and pray. We can wish you well. We can encourage you and your family. Vent all you want. Move forward and don't ever stop. You guys can do this. Sending you all my love.