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GIST Support International - “Dancing With NED” -- How Ned Was Born
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"Dancing With NED" -- How Ned Was Born

by Louise Ladd


A long time ago, back in 2000, before we knew about list-serves, Carol Berres and I were an army of two battling our diagnosis of leiomyosarcoma, the only two in the world, it seemed.  She found me from a brief note I posted when I stumbled across an internet board, as a computer neophyte.  She too was a writer, good enough to support her two young daughters with her skills.  She too discovered her tumor when it ruptured over a Fourth of July weekend, three years after my similar surprise.  Yes, we had a lot in common, but it was Carol's wit and warmth that kept us going through the rough patches, my surgeries, her chemo and another surgery...

I'll recount her story briefly, the best I remember it.  It is, of course, unique, as we all are, yet you'll find familiar elements.  Recently divorced, Carol had just closed on a new house and was about to move in.  She'd been having stomach trouble but who wouldn't, after losing her father the previous year, going through the difficult divorce with all the turmoil involved, plus raising two daughters, one only 4, the other 12, a budding young teen.  She felt she was finally getting her life together, however, with the new house and a new job.  And then just before the Fourth of July, the pain in her belly grew worse...

Most of us have heard the same story frequently, including the emergency operation, although in Carol's case one element was a bit ominous: her tumor was the size of a watermelon.  One wonders how something so large could grow inside a fairly small person (five foot four, I believe), yet somehow even Carol didn't even suspect its presence. 

Remember, this was before Gleevec existed, before GIST existed. With a diagnosis of LMS the traditional chemos available then were generally ineffective, and we both knew it, but Carol was trapped by a female doctor who said to her: "Wouldn't you want to think you've done everything you can to be here for your daughters?"  Ye olde guilt trip.  So Carol, knowing it was probably all for naught, went through months of chemo with its common results, including the loss of her hair and general debilitation.

No matter how rocky the road, Carol never lost her sense of humor.  I could count on her emails to be a bright relief in the midst of bad news.  We both continued to search the web for help and information.  Neither of us suspected a group had formed under the ACOR umbrella, all of them either LMS patients or caretakers.  It took a few more months before I stumbled across them, and, of course, later on we discovered that some of us, the lucky ones, including both Carol and myself, had in fact another disease called GIST, and there was a brand new type of drug that might actually work on it, with spectacular results for some patients.

But before this important change in our lives, I wrote Carol one day about several medical journal articles I'd just read.  They used the acronym NED, for No Evidence of Disease, to report some findings.  At that point we were both in that category: we had No Evidence of Disease as I joyfully pointed out, and boy, oh boy I really liked being NED!

Carol wrote back, saying she, too, liked my new boyfriend, Ned:
 
"Fabulous!  You and Ned make such a lovely couple.  I know you'll be happy together for a long, long time!"

She added she wanted a few dates with him also.  Ned was born and unselfishly we shared our dance partner with the list.

We went on writing to the LMS list and each other, cheering each other on through operations and CTs.  Two years later, in response to a post from someone who resented being asked to "thank her cancer," Carol responded she too felt the same way at first, but over time she began to rethink it:
 
Cancer has given me the opportunity to rediscover my spirituality, creativity, and to understand that it's ok not to be driven professionally, because there are much more important things in life. It has given me time to get to know my kids and to appreciate my 14-year-old daughter at a time when we probably would have been screaming at each other instead if not for almost losing the battle. It has made me cherish the seasons and even stop hating housework and other chores I used to feel were mundane, tiresome and too much work. Now, I am just happy to be here to do them.
 
Then, in 2003, Carol sent me a note I found worrisome.  It was hard to predict the exact consequences, but here her anger is clear, and indeed she did lose "some valuable time."  She wrote:
 
"Next CT is Monday morning. I see the doctor (Dr. Putz as I like to call him) the next day. Even if it shows all is going well, I will NOT be going back to him! I think he was remiss in my CT of April as he sent back CT films to Madison (even though his office had just had them a few weeks before when I met him for my first consult meeting with him) so he didn't have anything to compare the CT to. He was supposed to follow up and get back to me if there were any problems and I never heard from him. Now I think that is when the first real growth showed up, so I may have lost some valuable time.  I go to Dana Farber on Sept. 5 for a consult."
  
By not comparing the CT films, Dr. Putz allowed a new tumor to grow quite large, undetected.  When Carol arrived at Dana Farber she was dealing with a hard truth.  Since Gleevec had failed her, she started the new Sugen regime (now Sutent).  In the beginning, the trial required her to stay in Boston for weeks at a time, commuting home whenever she could.   Fortunately she had a sister who lived in the Boston area, but it meant leaving her daughters in the care of another sister back in Milwaukee.  Little Cassie, now 5 I believe, was upset by the separation, and her teenager had to deal with turbulent problems without Carol's loving presence.  Phone calls and one short visit to Boston were poor substitutes for a live-in mother.  But Carol stuck it out, hoping the sacrifices would all prove worthwhile.

In February Carol once again flew to Milwaukee, exhausted, but deeply happy to be home again.  As she told me this story on the phone, she was laughing at the absurdity of it.  That night she fell into her own bed, relieved to be surrounded by the familiar.  In the morning Cassie came in to wake her mother and Carol said she'd be up in a minute.  Cassie returned again and again but Carol kept falling back asleep.  Finally she woke enough to make the effort but found she couldn't get out of bed.  She'd had a stroke and was paralyzed on one side.

Determined, Carol began physical therapy, working hard at it, hoping to build up the strength she needed.  As always she was optimistic that she could overcome this latest set-back, but in reality she began a slow slide down.  The news of her death hit me harder than I ever imagined.  Not Carol.  Please, not Carol.  Carol, you deserved to dance with Ned.  You, of all people, earned your turn with Ned.  Thanks to you, hundreds of people have met Ned, danced with him, or longed to.  Mother, writer, fighter, good, good friend, always with a chuckle in your voice, warm, witty, you deserved an endless waltz with Ned.  I miss you, Carol.  We all do.    

 



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