Posted by : admin | On : March 7, 2012

The following post was written by Yitzi Zablocki, Akiva’s brother, in response to a recent inspirational story about a friend and her cancer diagnoses. We welcome your comments and insights. 

A friend of mine was recently diagnosed with stage 4 stomach cancer. It is too much of an understatement to say that this woman is full of life. There is no question that her gushing personality makes her by far the life of every party. Her diagnosis was a complete shock; as if the writer of this story was getting lazy and went for the absolute cliché. Her network of friends immediately went to work to find a hopeful possibility. Calling doctors, reading websites, leaving no stone unturned. 

I am a big believer in searching outside the box. My brother was diagnosed with a brain tumor when he was in his early 20’s. He was not given much hope by top doctors, but our family took an aggressive approach to research and did not take the doctor’s conclusions as the only final options. They put their bets on radiation, but that was clear to us as an irrelevant and possibly harmful treatment. We ended up defying all the doctors he saw in New York and took him to a rare doctor in Arizona who does successful surgery on the brain stem. All the top doctors in New York predicted my brother to be dead within a couple of years – but the tumor was removed and gone forever. He is alive and well at 32 expecting his first child this summer

This whole ordeal made me question the opinions of doctors. How many people like my brother have died because of limited medical advice by experts? What if my brother did not have the community of resources to look to beyond the traditional options? He would not be with us today. My brother has now dedicated his life to giving others ability to share the resources and information that most patients do not have. 

When my friend was diagnosed with stomach cancer, recommended a similarly aggressive and hopeful approach. Doctors do not have all the answers. Often they follow medical conventions that are forever changing. Doctors see many cases and most of our medical systems are based on what is best for the majority of cases. The beauty of humanity is that each case is very individual, and this means that the solutions doctors use are not always relevant. Doctors are tools to help patients make decisions.

In my friend’s case recent case, her doctors were not hopeful either. They gave her 6 months to live. After every test, the news seemed worse and worse. Developed stomach cancer is tough, and I was not finding too much long-term hope in my basic research. All the doctors could suggest was that she try some chemotherapy to prolong her life as much as possible. 

Another close friend took ownership of this case, seeking out even more developed options and helped manage her case, while my brother advised on insurance and healthcare and connected our friend to other doctors. Ultimately, there is not much you can do – doctors see cancer, they say chemo. And when they see stage 4 cancer, they are not very hopeful.

We know that my brother’s situation was a rare tumor and an even more rare solution. But I learned from that to not take doctors words as final. Push for more options, and keep trying until you have exhausted them all. This is life we are talking about here, not an online research for a new couch. This is what it is all about, this is what we spend our time denying; at any moment this can happen to your nearest and dearest. 

Not everyone can be as lucky as my brother, even with the best research team. And when there is not much hope, we go back to our distractions, because some situations are out of our control. We focus on our jobs, our TV schedule, our travel. Things that we can control.

My friend reluctantly started her first round of chemo and we played the waiting game. Buy some time and see what comes next. Her doctors did not bring much hope when she went back for her tests after she completed the round. The plan was to try the round of chemo and see what new options and opinions can come to the table. She had already seen quite a few doctors, but it’s always good to seek out more opinions. She managed to get an appointment at another leading cancer hospital. If nothing else, it looked like this hospital was better managed and her case was in more capable hands. They set her up for more tests.

Today, she went back for some results before she started her next round of chemo. Low and behold, the results show that despite the readings from the doctors in the original hospital, her cancer is in complete remission – practically undetectable. The chemo has been proven to be more effective than anyone could have imagined. She is not out of the woods, and cancer is normally not simply cured, but no doctor, nor any case we researched, predicted this level of remission. 

This case, like my brother’s, is rare but again shows the importance of not listening to just one or two opinions. Even when things seem hopeless, the unexpected is a possibility. The irony here is that the solution did not come from some alternative option. It came from the most basic treatment. No doctor would ever tell a patient that a treatment can cure them 100%. Any doctor who is that sure of what will happen isn’t taking into account cases like my friend’s. The lucky one who performed above and beyond, and from the depths of despair, has been given her life back.




Posted by : admin | On : July 3, 2010

Revolutionizing the Doctor-Patient Relationship: Reclaiming Patient Individuality

Brain tumor and cancer patients deserve to be treated as individuals. It is time to revolutionize the patient-healthcare provider relationships! It is time to change the way we think about agency in the healthcare setting. It is time to speak out and say “I am not a factor, I am not a variable!”

In October 2005, four months after being diagnosed with an “inoperable” brain tumor in my brainstem, I was sitting in the examination room of the radiation oncology department of Montefiore Hospital. The nurse asked me the usual questions you get asked when you have a brain tumor, and then went on with a very detailed explanation of what I will be going through:

“First, we will be preparing a mask based on your head and face and the exact location of the tumor. It will then take a week or so to prepare the computer program that will allow the radiation oncologists to give the correct dosage to the exact location every time you come in. You will come in five days a week for seven weeks. Each time we will place the mask we programmed on your face and you will need to stay still . . .”

This went on for several more minutes while they took me around to see the radiation machine and sat me down to create the mask. I could not stop thinking of Dr. K’s promise, that he would be able to help me. He will use his magic radiation machine to stop this growth inside my brain, even shrink it. Despite hearing over and over again from countless experts that radiation does not work on pilocytic astrocytoma tumors, and despite the research, I was hopeful. What other reason would Dr. K have to promise me that radiation would work, what other reason would he hug my crying mother last Friday and comfort her?

“. . . oh, and one last thing,” said the nurse. “We need to tattoo your head and face with three dots.”

“What, what, what??” my cartoonish imagination immediately replied in my head. I saw myself spitting out water in surprise to this nurse’s matter-of-fact statement that I will have to have permanent tattoos done on my head. Was she not as optimistic as I was that I will have a normal life after this? Did she know something that I did not know?

“You have nothing to worry about, it does not hurt much, and two of the dots will be close to your hair line. Only one will be in the middle of your far head, but it is very small.”

Why did they need to “violate” me in order to make sure that the mask and radiation dosage that is going to “save my life” is in the exact same place each time?

“Is there another way?” I asked. But I knew the answer, why would there be another way, in an office, where patients only walk in scared for their life; no one asks these questions.

Patients, in general, are afraid to ask too many questions. And cancer patients going into treatments that are supposed to save their lives are afraid to mess up their treatment in any way. Last year, I was giving advice to a friend who was diagnosed with breast cancer, and she asked me: “Akiva. Tell me, am I allowed to ask questions?” She was terrified as it was from the cancer, and asking the doctor questions seemed like a scary act. “Of course,” I said, “you should ALWAYS ask all the questions you have, and make sure you are comfortable with the course of treatment they offer you.”

Healthcare providers are not used to having patients “rock the boat” with questions and requests that might require them to change their system. Years of management consulting firms creating operations management processes and flow charts for hospitals and practices, have created a well oiled machine in most hospitals; Best practices, and Six Sigma Black belts have taken over healthcare and perfected the system. The patient is part of the flow chart, and must fit into the box in order to be treated.

These systems have improved the healthcare experience and made the delivery of care more efficient while lowering cost. However, these practices have also, at times, turned the patient into a factor, part of an equation in a flow chart that needs to play out.

Patients are not a factor. We are not a variable that needs to be placed in a box in order for the care to be provided. We are individuals, that need to be treated individually, and we need to be entirely comfortable with the treatment plan in order for it to work.

“I don’t really want a tattoo, is there any other way?” I asked.

“Not really. Don’t worry, it is very small, it will barely show,” the nurse responded.

“Are you sure? Can you ask the doctor? He never mentioned anything about a tattoo.”

“We do this to everyone, there is no other way,” the nurse said.

I paused for a second, thinking of all the times in my youth that I pulled the religious card to get out of things in high school and the Army: morning runs, kitchen duty, etc . . .“ Was I really going to pull it here? “Really Akiva, are you going to pull the religion card for radiation therapy?” I heard my father’s voice in my head.

“Um, I am Jewish” I said. “We are not allowed to get any tattoos. If we do we cannot be buried in a Jewish Cemetery” I announced (a claim that is not entirely true).

“I will check with the doctor,” the nurse said, and went out of the room.

No one wants to mess with religion in this country.

“Ok, no tattoo, we will use a permanent marker for you,” she said, amazed herself how easy an alternative solution could be.

“Thank you,” I replied and lay down on the examination table, closed my eyes, and praised the gods of Sharpie® for saving me.