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My Brain Tumor Story

SparkPeopleHello from Sparkguy

Hi Everyone

A bunch of people said they were surprised to hear I had brain surgery. Well, I was surprised too!! Here is the story of the past week in my life:

Tuesday, October 2
I woke up with a long day ahead of me because I had a business lunch meeting in San Francisco. Although this was a long journey, it was exciting because I was having lunch with a co-worker and a high-level media person she knows. The goal was to discuss a possible partnership for our SparkAmerica campaign.

I felt normal.

The lunch started at 11:30, so I left at 9:15 for the long journey. We had lunch at a great restaurant named Perbacco. I had tuna salad and saved some to take home to my wife. The conversation with my co-worker Billi and her friend Mary was great with lots of possible ways to work together that could help many people. Mary was super-positive, so Billi and I left the restaurant on a "meeting high". Billi was parked in a different location, but she said, "I'll walk with you towards your car so we can talk longer."

After a short discussion, we approached my parking garage and were standing in the middle of a busy square area in San Francisco. Billi asked me a question. I tried to answer the question, but realized I couldn't access the words. I also remember thinking to myself, "this is going to make me look silly because what I'm saying doesn't make sense" and I vaguely remember feeling helpless. That's when I blacked out from the brain seizure. I don't remember any of this, but it was the full emergency situation.

Here is Billi's description for what happened during this time:

**
I observed this exuberant energy from such exciting things happening make a shift and there was an excited but confused look on your face, and you looked at me, trying to connect language with your mind, but then looked away to the right and back at me, as if to "shake the words out" --- I said - Chris, are you ok? I could see you in distress- Chris can you hear me? And you began to seem to vanish from consciousness- I screamed Call 911- Call 911-Call 911, as I cradled you to the ground, and got you laid down with your neck propped on my leg, to support your head from the ground- several by standers stopped and called 911.. I placed my hand on your chest and told you, "You're ok, Chris, everything is Ok, help is on the way" as I could see you begin to shake a bit more I turned you on your side, still keeping your head protected..I was afraid you might aspirate. You were unconscious and non responsive. I had you leaning on my other leg, holding your chest, and feeling your neck pulse (like I was playing a guitar), your pulse was strong and fast, and you were breathing. I kept telling you you're ok, and tried to help you relax your breath/pulse.

People around us made a circle and as more people walked by they said, we've called 911 and their already on their way.hang in there.. A man from the building we were in front of came over to us and said, Hi, I have emergency training and can help you- he said you looked like you were in the correct position, and asked your name, I said it's Chris- He also talked to you, letting you know everything was ok, and you had help on the way.

A firetruck pulled up and 5-6 firemen came to the sidewalk where we were. They asked me if you had a history of seizures or epilepsy- I said ' I don't know, actually, I don't think so but I'm not sure' They tried to sit you up but you were like a heavy noodle, and they lay you back down, this time using my purse and sweater as a pillow for you. The ambulance arrived not soon after, and two EMT's came out with the gurney and with the help of the fire fighters grabbed your arms and under arms, and legs, to transfer you to the gurney. I was asked again about your history or medicines, etc.I told them I would do my best to find out.

While they placed you in the ambulance, I called Amanda and said something like- Hi Amanda, it's Billi, Chris is ok, but he's in an ambulance and had a seizure. I need his wife's number to find out medical history and tell her where we're going - She was on it, and we hung up. I received a text from her and Dave with Karina's number and then Joe's number. I got through to Joe, and let him know what was happening and where we were going.

I jumped in the ambulance where the EMTs were asking you questions, and you were not responsive at first. They administered O2 and maybe an IV of liquids (I think) immediately when you were in the ambulance. As we got closer to the hospital, you were being asked questions, you were coming out of a haze, but answering non-sensical.. Ie; what year is it Chris? Who's currently president? Or Do you know what city you're in? and you were telling him about the partnerships in Pittsburgh. He stopped you and told you to just relax.
**

The next thing I remember was a guy sitting very close to me asking me questions, which seemed annoying. Then I realized I was sitting in the back of an ambulance and learned I had been "out" for about 20-30 minutes. Apparently only a small amount of the time was a seizure and then the brain "re-boots" like a computer starting back up and I sounded nonsensical responding to everything during the re-boot. Apparently it's still a mystery whether brain seizures can kill brain cells.

They took me to the emergency room of the CPMC hospital. They examined me and asked a bunch of questions. All of my vital signs appeared normal and I had no problems answering any questions or remembering everything other than the seizure time period (they weren't sure if it was a true seizure yet). They wondered if I was dehydrated or something. It didn't seem like a big deal. Next they gave me a CT scan.

After a while, the doc came in and asked if it was ok if my brother and co-worker in the room heard the results. This was a "gulp" moment since this made it likely to be bad news and I said yes. She said the CT scan showed a mass in my brain and they needed to send me to the neuro campus for an MRI that would show more detail. So another ride in the ambulance and now this was a lot more serious than being dehydrated. I worked to motivate the paramedic in the ambulance on his fitness program because he wanted to become a firefighter but needed to pass the fitness test.

At the other location I met Dr. Leng and had the MRI. He showed me the results and said that I had a meningioma, the most common type of brain tumor. He said the good news is these are usually benign (80% of the time) and mine happened to be in a relatively easy to remove location near my left temple. A meningioma forms in the membranes outside the brain and then presses against the brain as it grows. They typically are small and slow-growing. But, he said the problem with mine is that it was now large enough (around the size of a golf ball) that an area of brain inflammation from the pressure also showed up on the MRI and that's what caused the seizure and that's why we needed to get it out of my head.

He also said there are two types of meningiomas: the most common type sits on the membrane and is easier to pluck off. The abnormal type, however, starts to attach to the brain and dig into the brain some, making it more challenging to remove. I had the abnormal type to some degree, but I trusted Dr. Leng.

Dr. Leng is an openly caring person and I had multiple people say he's known to be both a very good surgeon and they'd want him operating on them if needed because he really cares about his patients.

Wednesday October 3
I slept about 10 hours the night before the surgery. The most surprising part of this experience is that I didn't feel scared much the entire time. It felt like a combination of:
  1. This was my time to get this issue fixed and I was being guided to the right people to help me fix this issue (10 minutes later and I could have had the seizure while driving on the freeway)
  2. It felt like I had more work to do here to help people, so this was going to be a positive for my brain and not a negative
  3. I could feel all the positive thoughts and prayers from family, friends, co-workers, and thousands of people around the world. I told our members that I think it's nuts people are being shamed for offering thoughts and prayers in tough situations and I asked for as many as they wanted to send. I spent the time just before surgery reading those comments on my phone from SparkPeople members around the world and that put me at peace going into surgery.
The surgery was scheduled to take 2-4 hours, but took 5.5 hours to complete because of the challenge of separating the tumor from my brain. Who knows what he "saved" with that extra work on my brain? I'm so thankful to Dr. Leng and his team for the hard work to be as meticulous as possible on this task. I agreed with Dr. Leng beforehand when he made the deal that he would do a good surgery if I'd do a good recovery -- and I said I'd do lots of good things after that -- including later telling him all the people I'm fortunate to help at SparkPeople so he would become part of that story.

Thursday October 4
After the surgery, it appears there have been no changes to my brain including personality, memories, physical, or mental issues. The biggest test on Thursday was my physical therapy test. I had to do a bunch of things like balance tests and had no problems. There were some test elements where she said, "you can stop now, our test scale doesn't go that high." I was just so happy to be able to do all of this :). A feeling of gratefulness covers just about everything I'm able to do now.

It was neat that a lot of my advanced physical and mental SparkPeople training program had really prepared me for this challenge. I'll write more about this in the future.

October 5 & 6
Friday and Saturday started getting boring and stressful from being in the hospital. I was really tired of being automatically connected to two IVs and an auto-blood pressure check. I also had a little "hand grenade" that drained blood from my brain into a small container (nurses call them that because patients sometimes break them open and blood goes all over the place). After surgery I started in the ICU, the highest care section and then quickly got down to critical care and then a pretty regular patient area. I remember many doctors and nurses showing great compassion and care. Many of them work 12 hours on; 12 hours off. I can think of Regina, Marty, Anthony, Paulene, Christina, Tina, Anu, and Dr. Dresser.

On my birthday the 6th I officially learned from Dr. Leng that the tumor was benign and the followup MRI looked great, so that made for a happy birthday relief!

October 7
Late in the day, my wife drove me home to my two boys and the home recovery started. Thanks to her for her love and staying calm and collected during a tough time for our two boys. It was great to be home and start to take one small step at a time on the road to recovery.

One challenge for my two boys is seeing their father with a giant scar with staples in his head. It's about a 6-inch long semi-circle cut that starts by my ear. I think it's beautiful :). My 12yo will only hug me on the non-scar side now. I keep talking to them and they realize it's still me :).

The biggest question now is what will happen to that area of brain with inflammation that had been pressed against for so long by the tumor. Dr. Leng says typically after surgery the inflammation increases some, but that didn't happen to me which is a good sign. Then the hope is the inflammation subsides without the tumor pressure.

Obviously I'm biased in my analysis hoping for the best, but so far I think this is happening and my brain is legitimately working better. I think over some past time period it had started getting harder for me to access words and thoughts and my brain was just a bit "fuzzy" from the tumor and inflammation. Now it feels like I can access words and thoughts in a smoother and faster way. The scariest task for me is having longer conversations. As a note to everyone, this sure does make you think about taking care of that important computer up in your head that is so much more important than a computer since it controls your personality and many other factors.

Who knows, maybe this has been something of a disability for quite some time and now it's time to unleash my brain -- after a recovery period, of course -- to do more good things to help my family and other people!

Whew and Woohoo -- what a week!

Thanks again to all of you for your continuing positive thoughts and prayers. I really appreciate it and wish I could thank everyone personally!

You can leave me a note on this blog if you'd like.

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Chris "SparkGuy" Downie

SparkGuy

Chris (SparkGuy)



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