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.
Definition of Ironic: My health plan hired a third-party administrator to collect medical records from a provider for an insurance claim I made. The provider needed a signed release from me to provide MY medical records to the third-party to then provide MY medical records to my health plan. The third-party contacted me to have me sign the release form which I did and sent back to them. I asked the third-party if I can also get a copy of MY medical records that they are obtaining, with MY signed permission, to give to my health plan (always good to have copies of records). Third-party’s response: “You can ask your contact at {Health Plan} about receiving a copy of the records since we are not authorized to release records to anyone but the requestor.”
