Monday, April 9, 2012
My name is Ilan. I am a 29 years old male. I was born with a genetic disorder called Neurofibromatosis (NF). I have type 1 which can cause enlargement and deformation of bones and curvature of the spine (scoliosis), tumors developing in the brain, on cranial nerves, or on the spinal cord, and learning disabilities.
I've had a few a tumors throughout my life mostly in the neck area. I've had 3 major surgeries (by major I mean 2-3 days in the ICU, and a couple more in the secondary unit). I had my first surgery when I was 4 years old. I had a tumor in my neck that was pressing on my air canal and making it hard to breath. As a result of surgery my left shoulder became partially paralyzed, and I cannot raise my left arm straight all the way up. I can play golf, climb ladders, and even do some workouts at the gym, so no big loss there.
These neurofibroma tumors can also go away (I had one on the right side of my neck that disappeared), so in the first surgery the doctor didn't take out the entire tumor, just enough so I can breathe. These surgeries aren't easy, and involve dealing with blood vessels, so doctors try to avoid touching these tumors.
I had my second surgery when I was just about 8. The tumor from the first surgery grew back, and again was causing me breathing problems. As a result of this surgery, my left facial nerve was hurt, causing my left side to become almost complete paralyzed. Yes, a tremendous loss (mostly to my social life).
My third major surgery was about 5 years ago. I had a nice break from surgeries. But not from hospitals as this disorder requires yearly tests, scans, and doctor appointments. This time the surgery was for a different tumor still in the same area, a little bit under my left ear. I've had this tumor there for maybe over 10 years (these tumors normally grow very slow). The tumor was larger than the size of a tennis ball, not so apparent from the outside as most of it was internal. As a result of the surgery my left vocal cord was paralyzed. Another great loss. You will hear me fine on the phone, or if we talk in 4 eyes. But going to a bars or pretty much any other crowded loud event is not fun anymore since I cannot raise my voice enough. It's hard to be heard even if you're standing right next to me in these situations.
The surgery also affected my swallowing. It's now hard to swallow food. I need to chew longer, and cut my food smaller. A lot of time the food gets stuck, and sometimes I don't even feel it. I had a swallowing test maybe two years ago. They told me to turn my head to my left. It does make it easier to swallow, especially when I fill that something got stuck. My throat sometimes tickles out of nowhere to a point where I'm pretty much choking. It's kind of scary, it can happen at any time, even if I'm not eating anything. I can be in class, I can be driving, or watching a movie in the theaters, and all of a sudden I need to cough, and the cough doesn't really make the tickling feeling go away quickly and easily enough to not draw attention.
About a year ago I started having pain in my left shoulder blade. I just bought new golf clubs, a pull cart, and a used bag. I was hitting the driving range a lot, and playing lots of rounds with my friends. I thought I might have injured something in my shoulder for playing too much golf. I felt the pain only at night, when I was trying to relax and fall asleep. Being not 30, and with a "ehh, I'm young, it cannot be too serious" attitude, I decided to wait it out. I started taking pain killers, and took it easy with golf. I was planning on going to Israel to visit family soon, so I thought resting, and not playing golf for a while, might make the pain go away. But it didn't. When I got back to the states, the first thing I did was to see a doctor. He ordered me to do an X-ray where they saw a big mass in my upper left chest. Then I also did a CT to get a more detailed image. I knew I had a tumor there before, I've had it for years. But apparently it doubled in size over the last 2-3 years. The tumor is huge the dimensions are roughly 9x12x14 cm.
I decided to see my regular doctor who ordered about 4 hours of MRI scans. These are not fun at all. Try googling what a MRI scan sounds like, and imagine having to lay still in that machine for so long (being claustrophobic when it comes to these scans, I asked to split the scans as much as possible, and they were split into 4 sessions of about 45-60 minutes each). The suspicion was that this tumor has turned malignant (they are usually benign), and my doctor referred me to other doctors and specialists. About two months ago I had a needle biopsy, and the results weren't conclusive. Last week I had larger biopsy procedure, an actual surgery where I was put out for an hour or two, and in the hospital for 2 days. This time the samples were big enough, and the results confirmed the suspicion. So now, I also have cancer.
I've tried writing blogs in the past, and like many others, you get excited the first few days, and then forget about it. This time I hope to keep it up. I plan to share with you my everyday dealing with cancer, experiences from a socially unpleasant childhood, thoughts about life and the world, and other fun and interesting things I find online.
Thank you for stopping by, please come back soon, Ilan.
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I live in Kibbutz Naan. I am from India and working in the Company in the Kibbutz.ReplyDelete
I know you through your mother, who recently started to teach me Hebrew. We had 4 or 5 classes and most of my colleagues say my Hebrew is better than before.
She told me about your health and took it very seriously and excused herself from the teaching as she prefers to spend time with you than teaching.
It means that you are a gifted child of an excellent mother who cares for you. She must have been the teacher who taught you life's lessons such as being strong in adversities.
Looking at life as a gift and keep going ahead with positive outlook for future ahead, is best motivator for all humans. My best wishes and prayers will be always there with you for an early recovery.
I come from a culture which believes that each one of the humans can positively impact this world and every one has at least one thing that makes him or her feel having added value to this world.
You are no less as I see from your positive attitude. The world and all of us are looking for your recovery and your mark on this world.
Thank you for the kind words. I truly appreciate every single support I get.
By the way, I have traveled to India like many Israelis. I enjoyed every minute of my 6 weeks there. It was very peaceful and I loved the food.
Your history is a very interesting one! My 12 year old has NF1 as well and he absolutely LOVES golf!!! Please keep posting so we can all enjoy your blog!ReplyDelete
Thank You Kallie! I will keep posting as long as I can. Hope you keep enjoying it. Thanks for reading, and all my best to you and your son.Delete