Saturday, March 2, 2013

Sloan Kettering Update

The very least you can do in your life is to figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof. - Barbara Kingsolver

October 2012
104 lbs
All summer, and and in the beginning of the fall, I kept loosing weight and muscle control. I got down to 104 lbs from 127 lbs in a matter of 6 weeks, and despite a 3,500 calorie diet I just couldn't manage to put any weight on. My coordination got worse - things would slip from my hands and my legs would buckle from under me.

We were worried: my doctor's, my family and my friends. My bones felt crushed in an invisible vice... it seemed hopeless until October, when I met my boyfriend Victor.

February 2013
113 lbs
As our relationship began to grow, slowly the weight starting coming back on. The body and the mind are inextricably linked; and the value of being loved and adored - and having someone to devote yourself to - cannot be underestimated in the fight against elusive illnesses. Over the past four months I've gained 11 lbs and recently had a CT scan at Sloan Kettering, which showed that my condition is stable.

Sloan CT - STABLE Feb 2013

We are still realistic about future complications. That's the problem with rare illnesses - whether my ongoing health issues are related to Carcinoid or not, as Dr. Nash said during my last visit, doctors are very good at saving lives but not always so good about improving the quality of life with chronic conditions. Above all, hope is what will in the end make the fight worthwhile.


  1. So happy to hear you have gained much-needed weight (I have the opposite problem!) but yu've also found love again. AWESOME and wonderful, life-affirming and deserved. That is the sugar in a cup of bitter coffee... suddenly life feels delicious! Congrats and good (continued) healing as you tiptoe into wellness!

  2. Dear Marlena,
    Overall, things seems to be stabilizing healthwise for you and happiness is in your life with this man Victor, I'm very happy for you.
    Thank you for posing your latest news. It's good to hear from you.
    (from Toronto)

  3. Thank you both so much for your ongoing support!! zebra hugs