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NCI-CONNECT Rare Brain & Spine Tumor Network
 

Near-Death Experiences Guided by Faith

, by Tom, Olidodendroglioma Survivor

Tom sitting with his wife and two children

Tom and his family.

Credit: NCI-CONNECT

Tom survived a car crash, two bouts of cancer, and an autoimmune disorder. He shares how faith got him through hard times and changed his outlook.

I am a lawyer by trade, and in 2006 while I was driving from one court to another the left side of my face felt like it was pulling over to my left ear. Thinking I was having a stroke, I was able to at least have the wherewithal to hit my hazard lights while I was trying to pull over. Suddenly, all I heard was some horns blaring, and it was lights out. When I woke up, I was in a grassy area off to the side of the road with a paramedic kneeling on top of me holding me down and trying to keep me calm. I kept trying to tell him that I needed to get up and go to court because I was going to be late. The words in my head made sense, but the words coming out of my mouth were a garbled mess. At some point, somehow, I was able to give medical personnel my fiancé’s phone number.

Later I found out that I had a seizure behind the wheel of my car. As a result of the seizure, I ended up hitting four other cars and a pole.  The front driver’s side of my SUV was basically demolished. The airbags deployed, but miraculously I wasn't hurt at all in the accident.

I was transported by ambulance to a local medical center where I was in and out of consciousness. I vaguely remember being placed in a machine (which I later found out was an MRI) and people yelling at me to stay still, but I don’t think I was very compliant.

Once I woke up in the recovery room, my fiancé was there with couple friends she contacted for support. A doctor was sitting at the foot of my bed, and he said, “Well, I have some good news and some bad news.” The good news was that I had no injuries from the accident. The bad news was I had a very large tumor on the right side of my brain.

Brain Tumor Diagnosis and Treatment

Prior to my seizure, I had absolutely no indication that anything was wrong.  My fiancé and I were just engaged, and we had plans to be married three months later. The doctor looked at us  and said, “You may want to move your wedding to an earlier date” since he wasn’t sure if I would make it. I can remember my first thought being, “No way! I don’t accept that.”  

I just told them, “Whatever it is, it is - we'll deal with it.”  Ultimately, I was transferred to another hospital under the care of a more experienced neurosurgeon to try to determine what we were dealing with. After the biopsy results came back as an oligodendroglioma, he referred me to The University of Texas MD Anderson Cancer Center in Houston, Texas where I became a patient of neuro-oncologist Mark Gilbert, M.D. They ran a lot of tests and a functional MRI to see what was going on and determine a treatment plan.

From 2007 to 2009, I had 24 months of oral chemotherapy.  It was a real blessing to be able to take the chemo in pill form rather than IV. Mercifully, unlike so many patients, I never suffered any adverse effects from chemotherapy. Following therapy, I had periodic MRI's to make sure everything was stable. At one point, a scan indicated the reemergence of tumor cells. I went back on the chemotherapy for another 20 rounds until Dr. Gilbert noticed that the tumor seemed to be progressing. The tumor seemed to be migrating toward the other side of my brain, so Dr. Gilbert decided the next step would be radiation treatments. Fortunately, I was able to have the radiation treatments in Atlanta, and I was able to continue working. After about three weeks of radiation, I finally had to stop going to court. I was completely exhausted and had absolutely no energy. I also lost a good bit of hair around the radiation site, most of which has grown back. Those were the only side effects I suffered from the radiation.

From the end of my radiation treatments in October 2013, everything remained stable until October 2019. By that time, Dr. Gilbert had moved to the Neuro-Oncology Branch at NIH, and I, like many of his patients, followed him. He saw something on my scans and recommended surgery. On November 15, 2019, I had my first surgery at NIH. Up until that point, I only had biopsies. My neurosurgeon Kareem Zaghloul, M.D., Ph.D., of the National Institute of Neurological Disorders and Strokes at NIH was amazing. He was able to remove the new growth and a fluid filled sac that had developed over the years near the tumor site. I was awake and talking the day of the surgery and was up and walking the next day.

I left the hospital four days later and I was utterly amazed at the speed of the recovery AFTER BRAIN SURGERY!

Tom

It was absolutely incredible to me. I could never have imagined it was possible. Not only that… I still had a full head of hair!

Thoracic Tumor Diagnosis and Treatment

While I was at NIH for my brain surgery, I met with the Thoracic Surgery Branch to biopsy a lump I could feel along my rib cage. The biopsy diagnosis was a low-grade chondrosarcoma. The thoracic team scheduled surgery to remove the tumor on January 7, 2020. So, I went home for the holidays, and then right back to NIH for the thoracic surgery. The thoracic surgery was actually a little more difficult to deal with than the brain surgery. Based on the location of the tumor and the nature of the surgery, it was hard to move and much more painful. I was released from the hospital nine days after surgery.

Autoimmune Disorder Diagnosis and Treatment

My wife and I made it safely back to Atlanta. Two days later, I was experiencing numbness and tingling in my hands and feet, and extreme weakness in my legs. I tried to get up and out of bed at my house and just collapsed on the floor. My wife had to call the paramedics to get me off the floor and out of the house. They took me to me to our local emergency room where I waited in a hallway for 11 hours. My symptoms progressively got worse to the point where, by that evening, I wasn't even able to use my hands to feed myself, I couldn’t walk and couldn’t even sit up on my own. As it turns out, I had developed Guillain-Barré syndrome (GBS), a rare autoimmune disorder that causes a person’s own immune system to attack the myelin sheath that covers the nerves. Basically, the neurological impulses aren’t able to get from your brain to your muscles to enable you to move what you want to move. In my case, it caused paralysis of both of my arms and my legs, and I was unable to move on my own. I spent the next three months in the hospital.  After being transferred to a hospital in Atlanta, I was given IVIG (intravenous immunoglobulin) treatments for GBS, but really didn't see any positive effects from the treatment for about six weeks. Ultimately, I was placed in ICU on a ventilator because of concerns that the GBS was attacking my diaphragm and affecting my ability to breathe on my own. I didn't take another step from the point that I collapsed in my house until late March. It was brutal. I had to rely on everybody for everything. I couldn't brush my teeth, feed myself or even breathe on my own. Because of this I have realized that every step, every breath, is a precious gift from God.

At last, I was moved to a long-term care facility where I was weaned off the ventilator in early March. Then I spent the next 40 days in a rehab hospital and by the time I was released in April, I was able to walk using crutches. I was finally able to get back to doing the “extraordinary” ordinary things in life that we all too often take for granted.

Learning Everything is Going to be Alright

My health has been a roller coaster ride and I am grateful and blessed to still be here. It sounds strange, and almost ridiculous, but in many ways, cancer has been a blessing in my life. Cancer has given me an opportunity to shift my priorities and forced me to look at life in a different light.

Prior to my diagnosis, I focused primarily on my job and the small stuff. Through this journey, I learned to appreciate so much more of life. The grass is greener, the sky is bluer, the air is fresher, and love is deeper. Cancer has pushed me to focus on what's most important - the people that I love and those that love and support me, most especially my family. My brain cancer diagnosis hasn't deterred me from being able to do anything I was able to do prior – I have done so much more. Since my diagnosis fifteen years ago, I got married, I’ve been blessed with two amazing kids - my twins, Sophia and Noah, and have met so many wonderful heroes in medical professions and fellow patients. I am eternally grateful to my wife, my kids, my family, and all the doctors, nurses and countless others who have cared for me over the years.

And most importantly, I am so grateful to almighty God. I've always been a believer in God, but even if I hadn't been, this experience certainly would have opened my eyes. If it wasn’t for the grace of God, I wouldn’t even be here. I have grown in my faith tremendously over these past fifteen years, and I know that will continue. My faith sustains me and gives me hope. None of us have an expiration date, and that's how I've always approached my illnesses. Life has been and will continue to be an incredible journey. God is so good.

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