Where Does the Patient Fit?

Patient advocate Alan Blaustein visited a number of doctors, a handful of wrong diagnoses, and a dozen unnecessary prescriptions before finally being diagnosed with a rare form of cancer. Here, he shares his story and describes his hope for a reformed system and better communication among health providers in the near future.

Alan was diagnosed with thymic cancer in 2005. Since that time, he has focused much of his efforts on helping patients and caregivers make better decisions in the face of the healthcare system’s complexities. He has started a number of successful ventures (e.g., OpenSky.com) and spends as much time as he can on charitable activities (e.g., The Foundation for Thymic Cancer). Most importantly though, he is the father of three wonderful kids for whom he wants to set a lasting example of the right way to do things.

Alive Inside

Alive Inside documentary short – Story of Gil & Denise

I Let Her Die: A Story of Suicide by Starvation

What does it mean to be a human being? What does it mean to live a dignified life? Should the two not go together? When a person no longer has any real awareness of her existence, no recognition of previously loved friends and family, no control over body functions, no ability to feed herself, is this a dignified life? Is this a human existence? How much worse the situation must be to a person who exhibits all of the above losses, but who still retains enough lucidity to understand the situation. Living must be a torment, a “hell” on earth, except to those who still retain a belief in a “heaven” after death. To someone like that, the only control left, is over food. Whether to eat and live, or refuse to live, and die. Suicide by starvation. I was faced with just that situation.

I let her die. When my aunt was admitted to a nursing home, she weighed about ninety pounds, and was hardly eating. The team of doctors, nurses, social workers, psychiatrists, suggested a feeding tube. They were shocked by my immediate refusal, as they felt it was the only way to keep her alive. I was the [...] continue the story

Courage, Hope, Music and the Will to Survive

In August of 2004, Jason Crigler, one of New York’s most sought-after guitarists, suffered an AVM brain hemorrhage while playing a show in Manhattan. He was rushed to the hospital where doctors told Jason’s family, “Even if he lives through the night, there won’t be much left of the man you know.”

Jason’s pregnant wife and the rest of his family refused to accept the dire prognosis. Convinced that Jason was “there,” his family mounted an intensive and intimate course of rehabilitation that would force Jason’s doctors to reconsider the factors that inspire recovery.

Jason and his sister Marjorie have developed a powerful multimedia presentation that explains how and why Jason recovered. Drawing on their unique, personal experience, they show how intense family involvement makes the difference in a positive recovery. While Marjorie speaks from the family’s point of view, Jason offers a survivor’s perspective on the challenges he faced.

For more information, visit www.defyingtheodds.net

Ask Jai – When you want to scream at the world

February 2011

Dear Jai:

What did you do when you wanted to break down or scream at the world, but knew it would only distress your husband?

We found out recently that my husband has inoperable lung cancer and we have an appointment to see the oncologist soon. At this point we don’t know how bad it is, but there seems to be little hope.

Thanks,

Barbara

Dear Barbara,

First, let me assure you that fear is a normal and healthy response to hearing that dreaded phrase, “You have cancer” for either you or a loved one. One can be strong and dedicated to fighting this terrible disease and yet still be terrified. How you deal with powerful emotions, like fear, during this time of incredible stress will be its own trial. So, it’s important to find positive strategies that work for you.

For me, sometimes I was able to talk to my husband about what was worrying me, but sometimes, like you, I didn’t want to upset him. So, I would call, email, or text a close friend to talk to about what was going on that was bothering me. I learned how to text, so I could get instant support when I was in a public [...] continue the story