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My brain tumor adventure

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Wednesday, October 10, 2018

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

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 question mark 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 :).

If you have a question, my head has the answer!

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.

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!


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Member Comments About This Blog Post
  • no profile photo COURAGE8
    good luck with your recovery!! stay strong
    3 minutes ago
  • 222722
    38 minutes ago
  • 222722
    Thank God your surgery went successful dear. We don't just know you for your physical appearance but we know the Chris inside you, its just a scar. Regards. to your beautiful family.
    40 minutes ago
  • JODY-S.
    Chris, I am so shocked to hear of this. Sending prayers and well wishes for a complete recovery.
    1 hour ago
  • CHEROKEE1946
    I am glad surgery is over and you are getting better. You are in my prayers.
    5 hours ago
    Wow. Your story is very inspirational to me. I'm having what was supposed to be bunion surgery next Friday, but due to the amount of damage to the bones in my feet is going to be a fusion of my big toe after they put all the bones back where they are supposed to be. I'm crushed because I can never wear heels again. Well, kitten heels will be okay, but I have so many pairs of 4" stilettos that I can never wear again. I don't wear them everyday, just when I'm going out, but I love my heels, I love the way I look in them, and they make me taller. I have a different perspective after reading your story. This will be easy and I can do this. The consequences are next year at this time I'll still be able to walk, just not in heels. Our problems are only as big as we make them. Congratulations and I'm so glad you are still with us.
    11 hours ago
  • LORNE67
    I'm glad to hear you are on the road to recovery!! I missed the news earlier due to being off the internet quite a bit lately. Prayers for a continued recovery. Thanks for sharing!
    12 hours ago
    What an amazing story! I'm so glad it all went as well as can be expected under the circumstances!
    13 hours ago
    16 hours ago
    What a story; love your positive attitude!!!
    Keep up the faith and all will be fine.
    All the best!

    16 hours ago
  • no profile photo OREGONSWEETS
    hey, heal like a champion! Love the part about you encouraging someone's health on the ambulance ride.
    17 hours ago
    Thank you so much for sharing your story and for being such an inspiration! Your story really hits close to home and it touches my heart deeply. It is truly inspiring to see how amazing our body and brain can be. I pray for a complete recovery for youand blessings for your family as well!
    20 hours ago
    How scary!! You had such a positive attitude! Your recovery will go so much smoother with all the positive energy.
    21 hours ago
    Thankyou for this story
    I am very glad for you that things worked out the way that they did.
    I too, require major heart surgery but need to lose substantial weight before hand.
    i have already lost weight using Sparkpeople and advocate this website to all that are interested in health matters.
    a large proportion of my day is spent on this website and i consider it to be time well spent
    i have given guidance to other Spark members, 1 of which has been able to reverse type 2 diabetes.

    wishing you all the very best
    fond regards
    richard k. emoticon emoticon emoticon
    23 hours ago
    23 hours ago
  • no profile photo TIFFANYJEWELZ
    Prayers for continued healing! You will be ok, you may have a new normal. You have come thru like the champion you are!

    Blessings & Love
    1 day ago
  • no profile photo CEEKAY61741
    Wow! I’m praying for your complete recovery! Peace and blessings!
    1 day ago
  • no profile photo A911GIRL
    Wow! I can't thank you enough for sharing your personal story. I What a scary time. You are i my prayers for a full recovery. Thanks for all you do!
    1 day ago
    So very happy you are out of the hospital now and healing I pray God covers you as you get stronger daily... emoticon
    1 day ago
    emoticon emoticon
    1 day ago
    Wow. I am a cancer survivor, but that was easy! LOL
    I recently contracted shingles, and now have some nerve damage in my leg... I have to use a cane to walk and it's harder than I thought it would be... and the healing phase isn't over yet. But we can do hard things. All we need is just staying strong and being grateful for what we can do!
    Thanks for all the help you give!
    Kathy emoticon emoticon
    Today is a gift, which is why we call it the present!
    1 day ago
    So glad to read your post and that you're back better than ever. Amazing how we learn from these experiences and how we should be more grateful every moment for all that we have, good and bad. Often, as in your issue, the bad has led to lots of good. Prayers for your continued recovery will continue...Take care, thanks for the awesome post and 'Spark On'...

    Carpe Diem

    1 day ago
  • KMOM611
    OMG! Couldn't believe it when I first read the quick note of what happened a few days ago. This scenario is literally one of my nightmares! So glad you were in a place where people could get you help right away to have it taken care of. Happy you are doing okay, and my thoughts and prayers are with you and your family. emoticon
    1 day ago
    Oh my goodness! Thank you so much for sharing with us. You are officially on my prayer list now.

    Things like this let me know how things can change so radically for all of us at any given time. I am so grateful that you are on the mend & the outcome looks very good.

    I don't want to miss the chance to tell you how much of a blessing you and have been to me over the years. I have not reached my personal goal, but I know I would have been so much worse off if not for what you have done here. You've enabled me to educate myself on health and to motivate me when I was unable to generate motivation for myself. My heart is so full of thankfulness that you have made sparkpeople & through it you are a part of my life.

    I just want you to know how important you are & how so many people need & rely on you that you never hear from. I am one of many.

    God bless you, Chris... I see total healing head to toe & you will be better & stronger than ever.

    With great thankfulness you are in my life! emoticon emoticon emoticon
    1 day ago
    Thank you so much for sharing your amazing story! I'm so glad to hear that you are a success and well on your way to a full recovery! Continued prayers for you, your family, Billi, and the entire care team!
    1 day ago
    Amazing! So glad you are okay and awesome scar!
    1 day ago
  • AUCAT76
    What an incredible story! My husband, age 64, is a brain tumor survivor of 41 years. At age 23, he was diagnosed with a pituitary tumor, hemorrhaging on his optic nerve. Through an amazing set of circumstances and Divine intervention, he was referred to a gifted neurosurgeon who saved his life.

    He has fought many battles while struggling with adrenal insufficiency and seizures, but God had a plan for him and he has positively impacted and influenced many lives in his teaching career and beyond.

    You will do much do greater things in the future. Continued prayers blessings for your health and recovery.
    God Bless You! Cathy
    2 days ago
  • JIBBIE49
    I was sorry to see Paul Allen, of Microsoft died of cancer. Glad u r doing well.
    2 days ago
    So glad that you are doing okay now. I think your blog gives hope to others who are having problems. Thank you and thank you for all you have done for all of us through SparkPeople.
    2 days ago
    Thank you for sharing this with everyone. It will undoubtedly prompt others to investigate similar problems they are experiencing and find the cause which may be the same. If they catch them earlier they will possibly avoid much worse consequences. I'm sharing this with my wife because she is experiencing some difficulty accessing the words to express what she wants to say. I'm very happy that your outcome was so positive and that you will be able to continue to contribute to improving peoples lives.
    2 days ago
    emoticon emoticon emoticon emoticon I'm praying for healing & continuing blessings for you! emoticon
    2 days ago
  • CAROLJ35
    Thanks for sharing your very interesting story.
    How fortunate that Billi walked with you to the car and you were able to get help promptly.
    Keep us posted on your recovery as we care.
    2 days ago
  • WAPITI18
    Joe, I am very happy to hear that you are recovering nicely. I have a extremely similar story. In July, 2017 I was camping with my son and his Boy Scout Troop outside of Sedona, AZ. We were preparing to go on a long hike that morning, when I suddenly had a seizure in camp, in front of another adult. I had never in my life had a seizure. Luckily, the man I had the seizure in front of had some medical training while in the military. Another adult in the camp had smelling salts, which was also fortunate. I fell down and broke a rib during my seizure, but was conscious after about 5 minutes. Long story, but ambulance was called, went to a Sedona hospital where a CAT scan was done. A lemon sized tumor was found near my right temple. I was driven back home to Tucson, had a MRI, and a neurologist diagnosed the meningioma. I had the operation on 8/10/18 and the mass was removed successfully. A little piece of the tumor was left in my brain because it had grown around a large blood vessel. The doctor was afraid to remove it, as it may have caused a stroke. I was able to talk and think clearly a few hours after the operation, and was cautiously walking the next day. Out was dismissed from the hospital after two days. I hated that place, even though the doctors and nurses were incredible. Major swelling occurred, and was there for weeks. Had some serious headaches, but the meds helped a lot. Fast forward to today - I feel great and have no side effects except for a slight depression on the side of my head. I had a follow-up MRI last month, which showed no signs of the tumor returning. I will probably have to take 750 MG of Levetiracetam twice a day for the rest of my life (anti seizure), but if that is the worst of it, I'm golden! I am a God fearing man, and know for a fact that he was there every step of the way. My doctor was actually amazed how fast I recovered. I was back to my UPS Project Management job six weeks after the surgery. It was no picnic, but I feel like I have a new lease on life now. It is amazing how similar our "question mark" or "fishhook" scars are. I will include you in my prayers, for a full and quick recovery. Good luck to you. You got this! Adam M. from Tucson
    2 days ago
    Thank you for sharing! Will pray for your continued recovery.
    2 days ago
    I am glad that you are doing so well
    2 days ago
    Praise God! Thanking the Lord for a speedy recovery!
    2 days ago
    I am so glad to hear that you are doing better!
    2 days ago
    Thanks for the update! Here's to a full recovery for you.
    2 days ago
    Sending much love, you are a true blessing to know. Glad things worked out so well you are truelly blessed. Take care of yourself and your dear family. Thank you for sharing your story.
    2 days ago
    Thank you for your usual candor, humor, and humility. Life can, and does, change in a minute. I am positive that your physical and mental fitness prepared you well for a successful outcome, not to mention, most of all, your positivity. I will continue to pray for you and your family.
    2 days ago
  • MOMS100
    Oh, thank God! emoticon
    2 days ago
  • TERRI1458
    emoticon News! emoticon being sent for a full recovery and no problems! May God's emoticon emoticon watch over you! emoticon and comfort to you and your family!
    2 days ago
    To think that you've been doing amazing things while having a brain tumor. It makes me think you've got some HUGE accomplishments on the horizon.
    2 days ago
    Oh man! Sorry to hear this & I hope that you recover well!
    2 days ago
  • KELLEY9811
    I'm so glad to hear that you are on the road to recovery!
    2 days ago
    Very glad to hear that you were with someone who could care for you in your time of need, and that you had a successful surgery with an incredible team. Wishing you a fast recovery!
    2 days ago
    God bless you and your family!
    2 days ago
  • JOLENE2787
    So glad for the positive outcome! Thanks for letting us know - you and your family will be in my continuing prayers!

    2 days ago
    Oh. My. Gosh! What a crazy -- and amazing -- story! Thank you so much for sharing! Wow! I will probably read it over again because the first time I think it took my breath away. :o
    You are very blessed! Praying for a speedy recovery!
    2 days ago
  • no profile photo CAFIT123
    Best wishes for your speedy recovery. Thanks for all you do! Positive thoughts and prayers to you.
    2 days ago
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