Twelve years ago today, I took a leap of faith into the abyss. Despite over 30 experts telling me that my brain tumor was “inoperable” and any surgeon that tries to remove it will most likely kill me, I decided to fly to Arizona and trust that Dr. Spetzler could save my life. Over the years I have always pondered how lucky I am to have lived. Truth is, it was not luck at all. I had spent months becoming an empowered patient while my tumor grew and pressed on the cranial nerves in my brainstem.  Together with my family and close friends, I contacted dozens of doctors and experts and read countless articles about brain tumors. I made an informed decision to ignore my NY medical team and trust a larger-than-life neurosurgeon in Arizona because I truly believed, after all our research, that he could do what he said he could do.

My journey then was mine alone. It is easier to make life-risking decisions like I needed to make when you are 25, single, and have no other choices. My family and friends were with me, but I set out on this journey on my own and my decisions only directly affected myself.

From the day I sat recovering in my hospital room, thinking about how I made my decision and was given a second chance at life, I knew that I would focus my life on helping others to become empowered patients. I truly believe that the communities I joined and the endless opinions I sought out allowed me to make and maximize the health care decisions I needed to make.

Amanda always tells me that I had my brain tumor experience as training for our son’s medical journey. In some ways, it is true. Unbeknownst to Amanda, she carried the CD40 Ligand Deficiency gene, and, regardless of who she married, her sons would have a 50-50 chance of being born with Hyper IgM Syndrome, a life-threatening and severe immune deficiency. In 2005, I lived, to find Amanda and fall in love, to be the father of Idan, to use my past experience in order to maximize our health care decisions to find him a cure. Call it fate, call it destiny, call it a series of unfortunate events, or, perhaps, call it the most fortunate of events. The journey I set in motion, the day I leaped off the cliff back on November 8th, 2005, led us to the point we are today.

Idan, our son, is doing great. The decisions Amanda and I made for him over the last four years have resulted in a true shot at a long and healthy life for our son – something we dared only dream about when he was first diagnosed. After learning all we could about Hyper IgM syndrome, we decided to travel across the country to Seattle in search of a cure for Idan. This time around we journeyed together, and our decisions were made for our son. We called upon a wide community of friends, family, and strangers, to help us along this journey with the hope to save our son. Inspired by Idan, and the amazing following his journey created, we spent the last four years working tirelessly to empower other patients and families to make the best decision they could when dealing with Hyper IgM Syndrome.

My work is far from being over. I may have been cured of my brain tumor, and Idan may be on his way to a cure from his Hyper IgM Syndrome, but so many others are in need of a cure. My wish is that you will help me continue the journey of patient empowerment.

On November 28th, Giving Tuesday, I will be calling again on all my friends to help us find a better cure for Hyper IgM Syndrome. Twelve years later my purpose is clearer than ever, and my journey is just beginning. Will you join me?

“Based on the rate of growth and the location of your tumor you have around two years to live.” That was the sad prediction I heard from dozens of physicians in the summer of 2005. From New York to Boston to Los Angeles and Jerusalem, everyone around the world we consulted had a different approach, but they all agreed: The brain tumor was “inoperable.”  I was twenty five years old and one year away from graduating Columbia University.  I was way too young to die.

I am still here. Ten years later, I am alive and well and tumor free and the only prediction that came true was the one given by Dr. Robert Spetzler in Phoenix, Arizona. With a big smile on his face he said: “I am 95% confident I can get your whole tumor out, and leave you in not much worse condition than you are now.” At first, it seemed his proclamation might have been an overstatement. On November 8, 2005, Dr. Spetzler successfully remove my whole tumor. While my family was assured the next day that the tumor was all out, and I would be fine, at the time it did not look like it. I was in an induced coma, intubated and had tubes sticking in and out all over my body. I only woke up four days later, when they were finally able to extubate me. I could not feel or move the left side of my body. I could not talk, walk, swallow or do much of anything. The right side of my face was paralyzed and numb, and I could not smile or even hold water in my mouth without it dripping out. Like a newborn baby, I was cradled and tended to by my family and an amazing team of nurses at St. Joseph’s Hospital in Phoenix. Every day Dr. Spetzler came by during rounds, looked at my broken and weak body, and proclaimed, “he is doing great!” Everything will be okay. Eleven days later, I was transferred by plane and wheelchair to NYC to Rusk Rehabilitation Center for what we were told would be a very slow and long process of rehab. There, I learned to walk, talk, swallow and was able to be released to outpatient in three weeks. I continued my rehabilitation out-patient while I resumed classes at Columbia. The right side of my face was paralyzed, and numb, and I had set a personal goal to smile once again.

Two years later, in November 2007, I had my diploma from Columbia and went on to obtain an MPH at the Mailman School of Public Health. I was dating the love of my life and was doing great, physically and professionally. But I still could not smile. Sure, I could mostly drink without spilling water out of the side of my mouth, and I had even perfected a method of blowing up balloons. But I had not reached my goal. The cranial nerve that controlled my face was cut or damaged and was not coming back. The doctors had told me over and over again: most deficit improvement is seen in the first 3-6 months.  After that, some might still get better in the first 2 years post surgery. But after those two years, things will not improve or come back. My fate was sealed. I may have been reborn as the superhero, iPatchman, but I was destined to always be defeated by DC Comics’ Two-Face.  

Two years later, November 2009, marked some of the happiest days of my life. I just married my true love. I had a dream job in healthcare consulting and life was good. I had outlived all predictions and was tumor free for four years. And despite the utter joy, I could not fully smile. I had perfected the Zoolander Blue Steel look for photos. My wife, Amanda had fallen in love with my half grin and I could not complain. Most people in my situation did not live to tell the tale, and I was complaining about a smile? I continued to refuse offers to surgically stitch my face in a permanent Joker grin and continued my own physical therapy and exercise to keep the little muscle tone I had on my right side of my face.

Two years later, in November 2011, now six years post-brain surgery, I sat at Nonna’s Italian Restaurant on the Upper West Side for my birthday dinner with Amanda. She handed me my birthday present. A little red box with yellow teddy bears. Inside, little baby booties and a handwritten note on tissue paper, with the message “To the greatest love we will ever know.”  She was informing me that she was expecting. We were going to have a baby in eight months. Inside, my joy was endless, and yet I still could not smile. Just my regular half grin in response to the best news anyone can get.

Two years later, by November 2013, we had experienced both extremes of any parents’ emotional spectrum. From the new happiest day of my life, the day my son Idan was born, to the scariest and saddest day of our life, the day he was intubated for PCP pneumonia. Even if I wanted to smile, I could not. We were filled of hope now, and longing for a normal life again. Just a few weeks after Idan’s bone marrow transplant, I celebrated my 8th year tumor free. I was full of hope that by my ten-year anniversary Idan would be cured and everything will be back to normal.  I stopped believing that I would ever smile fully again, even if I wanted to.

Today, two years later, Idan is not cured. We are heading towards a second bone marrow transplant in the spring, and life might never be normal. But hope is still part of every drop of my being. The same unrelenting perseverance that allowed me to live through an inoperable brain surgery has kept my son alive and well and found him the best care he could receive. My education, life experience and optimism serve me now as the president and co-founder of the Hyper IgM Foundation. Our mission is not only to cure Idan, but to work for a cure for all families and children living with Hyper IgM. I know this can be achieved. I know happiness is possible. I know normality is a state of mind. I know all this because I spend the day smiling. A full smile. I spend the day smiling when Idan wakes up in the morning with a million questions as if the night was just a fleeting moment. I spend the day smiling when I see Idan play with his little cousin and they both laugh uncontrollably. And I spend the day smiling when Idan is solving puzzles way too advanced for his age or building lego sets made for six-year olds.

Sometime, over the last two years of trying to achieve normality in a post transplant world, my smile just appeared. Despite all medical predictions of how or when deficits can recover, I am able to smile with both sides of my face now. Ten years, brain tumor free, and I am smiling every morning when I wake up next to Amanda and when Idan calls us into his room. If my smile can appear again ten years after it was removed along with a tumor that had my name on it, I know that anything is possible. I invite you all to help me make that which is impossible a reality. Help me bring a smile to the families across the world dealing with Hyper IgM Syndrome.

Donate today to my ten year brain-tumor-free fundraising page!

The following guest post was written by Lisanne St Onge Klute, a courageous women, who, in the face of a dire medical prognosis, chose to become an empowered patient and, with the help of social media, found the best possible treatment. It is a story of the power of social healthcare and the importance becoming an informed e-Patient as well as sharing one’s story.

In May of last year, I found out I had a Cavernous Malformation in the brainstem and it was bleeding, slowly disabling me. I was told by numerous neurosurgeons that it was inoperable. I went online right away and looked for support. I came across a support group where I met so many kind people, but nobody with the same condition as me, in the same location. I did learn from them to become pro-active in my health, to do more research.

One thing led to another and as my health was deteriorating and I felt myself literally hanging by a thread, I was desperately feeling alone. I had found stories of people who have had the surgery that would save my life, but they had lost all quality of life. In the meantime, one of my friends had found Dr. Robert Spetzler as one of if not the best neurosurgeons in the country, who is not afraid of operating in the brainstem. I sent him my MRI scans and he called back with a surgery offer. I was not expecting that. It was a very hard decision because to have the surgery, or not to have it, he could not tell me that one choice was better than the other. It was a damned if you do damned if you don’t. To not have the surgery meant that I could die or become severely disabled any day, and to have it meant that it would most likely save my life, but I would have deficits and a strong chance of being disabled now.

I needed more than ever to find someone, if only one person, that had been through this surgery. I kept searching, I kept not finding… but one night, I typed in Google a series of words I have not before. I don’t remember exactly what order of words I used, but it was something like “successful brainstem cavernous malformation surgery.” I stumbled on Akiva’s story (AKA iPatchman), I went back to his first post and discovered he had surgery in the same location of the brain as me! Not only that, but he also had Dr. Spetzler!! I was happily shocked when he shared that he was recovering and seemed to have a pretty normal quality of life. I sent a message to his iPatchman Facebook Page to both ask about his surgery/recovery, and to ask about Dr.Spetzler.

Before I even got his response, to make a long story short, I ended up in the hospital after having a worse bleed than the ones before. I now knew for sure that I needed the surgery, even if I had already decided it was best as a mother to ensure that I was going to be alive for my children, even if that meant i was going to be disabled. I was in the hospital when Akiva got my message and answered. He right away offered to call and I was amazed at the timing. I don’t think he knew at the time how desperate for answers I was. He was such an encouragement not only to me, but to my husband, and friends. Talking to him and hearing what he had to say gave me a lot of peace about my decision, and the fact that he had the same surgeon as me was just phenomenal to me. It really gave me so much hope at a time that I was made to believe I was going to either die or become a vegetable in the next week or so. He had had successful brainstem surgery and was ok, and it gave me more hope in one day than I have had in a year. It’s a beautiful thing.

Since then, I had the surgery, and I am still recovering, but I can walk, and I may not be able to work yet, but I know some day I will. I might go back to school. I have life goals and plans again. To have had a second chance like this was a feeling that I knew few people get. I also was contacted by 3 different young women that, like me, were desperately looking for someone. I know that reading the iPatchman blog encouraged them too. By letting me reach out to him, iPatchman made it possible for others to reach out as well, and it is amazing how many more people with “inoperable” cavernous malformation I know now, while I was all alone at first. Recently, Akiva told me, “Sometimes I feel like the reason we got so lucky, and were saved in the first place, is to help others,” and he is right. I truly admire that he went through this at a time when he was alone and came out so strong and positive, but by him sharing his journey, he made it so others are not going to be alone. It is like building an army. An army of fighters.

Follow Lisanne’s story on her Facebook Page: That Brain Fart. If you know anyone that was affected by a brain tumor  or a cavernous malformation please share this with them. 

May was Brain Tumor Awareness Month and I was very busy spreading awareness.  On May 3rd, we held our 4th Annual CBTF Young Professionals Group Bowl-a-Thon fundraiser. Thanks to over 100 volunteers and fundraisers we raised over $44,000 for the Children’s Brain Tumor Foundation. The funds were put directly to good use to send young adult & teen survivors to Camp Make-a-Dream in Montana. A week later, on May 16th, CBTF held its 10th Annual Dream & Promise Awards Benefit Gala. As a board member of CBTF, it was a great honor to see so many people who were passionate about this important cause come together for this great fundraiser. Once again, CBTF raised around $1,000,000 to support our mission to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors.

On May 19th I was invited by fellow brain tumor survivor/hero, Rick Franzo, as guest speaker at Catch the Brain Wave Brain Tumor Awareness fundraiser in the Poconos. You can see my full speech below:

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.”

Score 10 points to inefficient illogical health insurance industry.

On May 30^th 2008, a dozen brain tumor experts from over six different medical centers convened in Boston to discuss one patient’s treatment options. The patient, a 76 year-old man, had been diagnosed with a Glioblastoma Multiforme brain tumor, the “most common and most aggressive malignant primary brain tumor in humans.” What was astonishing here, according to NY Times writer, Laurence Altman, was this man’s ability “to summon noted consultants to learn about the latest therapy and research findings” – despite this being the most common brain tumor that has a relatively set course of treatment.

This man was able to solicit advice that anyone else diagnosed with incurable cancer could only dream of. How did he achieve this? Well, this man was Edward Moore Kennedy, or, to his friends, “Ted.”  As the NY Times stated: “the ability of a powerful patient — in this case, a scion of a legendary political family and the chairman of the Senate’s health committee” was extraordinary. This meeting led to Ted Kennedy changing his treatment plan from what Harvard’s prestigious Massachusetts General Hospital advised and opting to have surgery at Duke instead. Kennedy’s ability to seek out more opinions from the leading exports in the field is what led him to extend his life by 15 more months and live long enough to vote for the healthcare reform law he worked half his life to bring about.

When I read this article back in 2008, I was surprised to discover that I knew several of the experts that Kennedy consulted with. In fact, I too had reached out to them to get advice on my “inoperable” brain tumor in 2005. While not rich, famous or politically powerful, I was nonetheless resourceful and sought to make the most informed decision possible before starting treatment. Afterall, if one were to buy a new car, they would probably go online and read dozens of reviews about the cars they were considering. They would probably talk to different people who owned those cars and get their first-hand experience. They would then go to several dealerships and test drive the cars they liked, and, only after all that, would they buy a car. However, for some inexplicable reason, when we are faced with a dire illness and need to make a choice about saving our lives, we are expected to settle for one second opinion? Ted Kennedy did not settle for that and neither should anyone!

Around the same time, another rich and famous person was diagnosed with pancreatic cancer and wanted to do everything he could to stay alive. This man had brought us the iPad and the iPhone and he had the ability to convene the “expert panel” he needed to make his decision on a treatment choice. Once again, a person’s ability to properly face a cancer diagnoses was correlated to his status in society. If Joe Schmo wanted to have a call with the same 12 experts he would be looked at like a crazy person.

Even getting access to reviews of treatments online is difficult. If you Google “iPhone 4s Reviews” you receive over 373,000 results full of reviews of the new gadget. You can find Consumer Reports, YouTube clips and experts all over the world advising you to buy or not buy. But if you Google “stereotactic radiosurgery review” you get only 2,240 hits, none of which will actually help you make your decision.  In a recent NY Times article discussing the lack of online reviews for doctors, the author quotes a spokesman for the American Medial Association as saying, “Anonymous online opinions of physicians should be taken with grain of salt and should not be a patient’s sole source of information when looking for a new physician.” The author also quotes the manger of a review site saying that doctors have told her that “patients aren’t smart enough to figure out whether I’m a good doctor.” With this being the approach of the mainstream medical providers it is not hard to see why only the rich and famous can get the best possible advice from multiple sources.

This situation is simply unacceptable. Everyone and anyone should have full access to a system that allows them to make the best informed decision before consuming healthcare, especially when it is medical care that is needed to save one’s life. There are many organizations approaching the information problem, as it is goes beyond the issue of informed treatment decisions. ClearHealthCosts is trying to bring more transparency to the prices of healthcare while FairCareMD aims at allowing consumers and provider of health to agree on a fair price for treatment. And of course, Health2Social is determined to help people get to the best care they need and make the best informed decision when choosing a treatment course.

Look out for our next post, titled “The Informed Patient:  A Manifesto.” This Manifesto will list the steps and conditions that will lead to everyone having access to the same decision making support Ted Kennedy and Steve Jobs had, and, at the very least, the same that I had, which ultimately saved my life.

What do you think should be included in The Informed Patient: A Manifesto? Leave us a comment and share your voice!

Check out my guest blog post on ClearHealthCosts.com! Have you ever had similar issues with billing departments? I cannot be the only brain tumor survivor with crazy billing stories. Feel free to Like and Comment on this on my wall, ClearHealthCost’s wall and on the blog. Thanks. iPatchman

Check out my new blog post on Health2Social.com on the issues facing innovation in mHealth: In Fast Company Magazine’s February issue there is article titled “As Smartphones Get Smarter, You May Get Healthier: How mHealth Can Bring Cheaper Health Care To All.” The piece, by Adam Bluestein, is a survey of thenew disruptive innovations in the mHealth market that can potentially replace large, clunky, and expensive medical devices with small, elegant, and low-cost Smartphone accessories. The article touches briefly on one of the main challenges mHealth faces as it aims to grow its chunk of the $273 billion medical device industry from its current $2 billion market share.  As mentioned in the article: “At stake is the future of health care–and a share of the $273 billion medical-device industry, which is dominated by the likes of GE and Philips.” What is obvious here is that GE and Philips will not be happy with disruption from the startups which have the potential to replace their high cost devices. One of the biggest setbacks for innovation would be if these larger companies use their millions in cash reserve to lobby Congress to create more regulations that can potentially stall the influx of these new cheaper devices. As Bluestein discusses in the article, the “clunky-looking device eye doctors use to pinpoint your prescription–weighs about 40 pounds, costs $10,000” – and can be replaced by a similar functioning $30 accessory that can attach to your iPhone.

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