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My brain tumor story

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Wednesday, October 10, 2018

Hi Everyone

[Edit: Before you read this, here is one reason I'm sharing my story so widely: My neurosurgeon said that being otherwise healthy and fit helped me survive this experience and recover faster. Now I tell everyone that another benefit of good health and fitness is investing in yourself in case you are presented with a possible life or death situation like this. Be ready to fight if needed :)!]
**

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.

Thursday October 4
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.

Friday October 5
After the surgery, there have been no changes to my brain including personality, memories, physical, or mental issues. The biggest test on Friday 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.

Saturday October 6
Friday and then 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!

Sunday 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. Thanks also to my brother for helping a lot by being at the hospital and taking care of my car and some other challenging logistics.

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 :). I say that seriously because there could have been a real chance this was inoperable, so the scar is what got that bad thing out of my head. 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. [edit that this issue looks really good now]

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!

As an addition: my recovery is going great! Here is a blog talking about my most recent visit to my surgeon that included some tears and a declaration that this was not cancer:
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6534829

Chris

PS On February 24, 2019 and beyond, I'm adding links to several blogs I've written related to my surgery or lessons learned from it:

Most recent addition. Here are before and after photos showing my recovery:
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6570456

First post from the hospital asking for positive thoughts and prayers prior to this post:
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6531843

My protector dog: www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6536273

What in the world just happened?
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6539438

My new fitness streak: Day 8
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6540628

Compassion makes the world a better place
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6540628

Gratitude alters who you are:
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6544583

One step at a time:
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6546262

Dr. Flash thinks I'm ok:
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6546747

When you need support:
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6549563

Another good visit to the doc:
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6555971

How to be a positive person:
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6564069

Woohoo -- got my driver's license back:
www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6566676

Thanks for your support and for reading my story!




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Member Comments About This Blog Post
  • THETROUT
    I had no idea that this had happened to you! I'm praising God that this was not more serious! Thank you for sharing. It is a reminder that we are not invincible.
    44 days ago
  • BRENIE333
    Thanks so much for this post. I also have suffered from a meningioma. I had brain surgery all went well for about 5 years, then started getting headaches, blackouts etc. Found another or maybe same one whose root was missed that was too deep to do surgery on. Had Stereotactic Radiation (not fun).

    Quality of life has changed for me as I now have chronic migraines, and was recently diagnosed with a type of epilepsy 🙄.

    Just make sure to stay on top of everything but am so glad to hear you’re doing good.
    164 days ago
  • MILPAM3
    Thank you for supporting those who wished to support you with prayer.
    178 days ago
  • NEBRASKANNIE
    Thank you for telling us your story. My problems seem big, but the attitude helps or hurts, good or bad and you're such a good example.
    232 days ago
  • BBLESSED32
    So glad you made it and Billi was there. That is what we call a God thing. Hoping you experience so much more in your spirit to know that God saved you for a reason and your work is not done yet.
    233 days ago
  • HEDSTS58
    Wow. I'm glad you're doing well now.
    233 days ago
  • CAOMAGIC
    I am so happy for you!! I had no idea this happened because I don't get on SparkPeople that often, but today I had some spare time and was going through old e-mails and ran across this! Please keep up with the good things you are doing, God really has a good purpose for your life!! emoticon
    233 days ago
  • EMURPHY5793
    Chris, Thank you for the blessing of you and your site! I’ve been a member since 2011. I was shocked when I read this happened. I was diagnosed 2 years ago with a menginoma pressing out behind my eye. Your story and positive attitude will help so many realize: a. How common these tumors are b. The good health we need to keep ourselves in to recover from health obstacles and c. The joy and energy and love of our spark community for one another
    Thank you for your generosity of spirit and all the best to you and your loved ones
    234 days ago
  • PATRICIAAK
    PTL!
    235 days ago
  • JANEWATKINS
    Chris, Thanks so much for leading me to this page. There are so many things I would love to speak to, but that would require a long conversation . . . and you know! So I will limit my response to jiust one thing:
    You made the statement that if anyone had a question your head has the answer. On my. Yes you do. This blog is every bit as spiritual as it is informational. As tough an experience as it has been for you, your wife and boys, you will probably never know the myriad of people who needed that story. You have a very large pulpit in which to "preach it," and I am grateful to you for your honest, authentic ability to share a painful and private experience. Your personal life journey has resulted in transformation . . . both physical and spiritual . . . for so many people all over the world.
    My humble gratitude to you for your tender care of this Spark Community.
    244 days ago
  • CRIZGZR
    I tried to avoid reading this blog because I was afraid it would trigger memories and result in binge eating. In the eighties, when I was in my mid twenties, my husband had a similar seizure, his surgery did not end with good news and the next seven years were harrowing for us. It's been a long time and I'm remarried now, living a happy life. I recently bit the bullet and did 18 months of weekly therapy to deal with some of the things from that time. I am pleased that right now my pulse in normal and the only thing going on in my head is a pure sense of relief and well-wishes for you -congratulations! You've done so much to help so many, I am glad you'll be around for a long time to do even more!
    246 days ago
  • HAPPYCAMPER109
    Thank you for sharing. I am happy the results were as good as can be hoped for.
    287 days ago
  • TEXASFILLY
    WOW! Your life experience with this brain tumor broke my heart 'n moved me to tears, and because you shared your story~ into action to reclaim my own good health. I'm so thankful that our heavenly Father led you to the right doctor and that you are on the road to recovery. He has much in store for you to do, no doubt. Be well and may your New Year be filled with joyous good health. emoticon emoticon BB~
    290 days ago
  • MOMWANTSNOWAIST
    Praise God, the tumor was operable and removed!!! I am so glad you are ok,Chris! You always have been an inspiration to us at SParkpeople and you continue to be!!!!!!! emoticon emoticon emoticon emoticon
    314 days ago
  • NAYAH50
    I am hoping your recovery continues well and you are back to full health and full speed as quick as possible!! So grateful for those assisted you along this frightful journey.. stay strong!!
    321 days ago
  • CASEYTALK
    You have done so much for so many. The world is a better place with you in it.

    emoticon
    345 days ago
  • TUDAFD
    Keeping you and your family in our prayers. It's good to know your recovery is going well, too. Here's to another good week of recovery. I'm sure your positive attitude makes all the difference.
    346 days ago
  • no profile photo JSEATTLE
    I'm catching up with your story, OMG how thankful I am for you for sharing your story. Praying for your recovery time, I know you are strong and you have a terrific support system with your Family and Friends. You will yet GO FAR!
    348 days ago
  • TEMARTINELL
    Wow; I am just now reading this, Chris. Speedy recovery to you, and be easy on yourself. You will be all right, and that's coming from a brain cancer survivor and someone who's now had 24 brain surgeries.

    Much love,
    Tony
    350 days ago
  • PRIMROSE128
    Praying for the peace of the Lord for you and for your complete recovery.

    A. Laki
    352 days ago
  • VELDBLOM
    Chris, I'm glad you are up and about and feeling positive as ever. emoticon I am going to use your 'story' when I need inspiration. Annalie
    353 days ago
  • no profile photo NANCYAREYES1
    Great to hear your surgery went smoothly and recovery is already going well! Amazing to look back at the circumstances and how God protected you, for as you said, just a few minutes difference and you could have easily had this happen on the freeway! with a much worse outcome! So much to be thankful for...
    354 days ago
  • SALTYCHOCOLATE
    Just so very happy that you are ok. Prayers for a continued recovery.
    358 days ago
  • FAITH0405
    So glad to hear that you are well, and that you had people around you to help you in your time of need!! Prayers for a full and quick recovery!!
    358 days ago
  • URBANAUDREYE
    Chris,

    I definitely notice a change in your writing! If I were to guess, I'd say that tumor has been giving you some minor issues for about a year and a half. I had perceived a change in your writing then but wrote it off to being an exhausted mother. I'm definitely going to keep that knowledge tucked away in case I ever notice a change in anyone else's writing and conversations. I hope you continue a happy, healthy recovery!
    358 days ago
  • DANREIS1
    Thank you for sharing this! I'm glad to hear that you are OK, and I love how you are using this to inspire people! My prayers are with you and your family.
    358 days ago
  • CHANGEPOWER
    emoticon Best wishes to you.
    359 days ago
  • MARYJEANSL
    Best wishes for your continuing recovery.
    359 days ago
  • DMSGLASS
    Wow!!

    I remember my meningioma from 10 years ago. Except my scar is from ear to ear across the top of my head. ten years later and no new tumor. So thankful for prayers and family and friends who supported us through the journey. My sons were 16 and 18 at the time.

    Wishing you all the best in your continuing recovery.
    359 days ago
  • REJ7777
    What an amazing set of circumstances! The people you were with, the timing, the doctor, etc. God is watching over you!
    359 days ago
  • HEALTHYBARB1
    Chris...
    Incredible...thankful you had someone with you & were quickly taken to hospital. Thankful for great surgeon & care. Thankful you are home & healing. Praying for you & your brain!! Smiles Barb
    359 days ago
  • JAMER123
    Sounds like you are getting back to thinking about all the talks you are going through before your seizure. Soon you will be in full gear to get things up and going. And so glad you have been keeping us up on your progress and the SP progress.
    360 days ago
  • MMARLENE34
    I just read your blog and recent post operative post. What a frightening experience. Thank God there is no cancer. I've added you to my prayer list for your continued recovery. Thank you for sharing and thank you for all you do to encourage good health habits.
    360 days ago
  • JUNIORSSISTER
    God's Speed my friend. With all that you have done for others for encouraging good health and well being. I hope you feel the love and support from each and everyone of us. We just never know what lies around the corner. So fortunate for you to have had someone with you. For your wife and sons able to be there to support you as well. One step at a time.
    360 days ago
  • TEDYBEAR2838
    Thank you for sharing your story.
    GOD IS GOOD!

    360 days ago
  • no profile photo NATASHAZ3
    Amazing story and an ode to your indomitable spirit! Speedy recovery!
    360 days ago
  • BARBARAROSE54
    emoticon emoticon

    Thanks for sharing your story, continued prayers for a complete recovery
    360 days ago
  • GABY1948
    emoticon emoticon speedy recovery to you! You were truly blessed.
    360 days ago
  • CGMLH01
    Sending thoughts and prayers for a speedy recovery. Thank God for the good news of not being cancer, the wonderful medical staff, EMT, friends,first responders and your positive attitude that will helped the recovery. Always trust in God.
    360 days ago
  • no profile photo JAH1264
    Thank you for sharing your story. Although not as serious as yours I had a pulmaonary embolism in January and I am forever grateful for Dr Weintraub treating me before he got the official diagnosis. Like you I had things happening to me for sometime that I ignored because I thought they were related to my & a highly stressful life.

    What I learned is to pay better attention to your body and what it is telling you.

    Like you I feel very fortunate for all of the nurses and doctors who took care of me and will forever think of them and wish them well.

    I am happy you are recovering well and are doing well with this emotionally. Having a positive mindset is so very powerful.

    Thanks again for sharing and doing the good work that is SparkPeople.
    361 days ago
  • LUV2SNAPSHOTS
    It seems you were in the right place at the right time. Wishing you a strong and speedy recovery. Thanks for posting your story.
    361 days ago
  • no profile photo BONMONPETITE
    Keep up your good work for yourself and the universe
    Godspeed.
    361 days ago
  • no profile photo BADUREKL
    I am so grateful to know you are recovering so well. What a blessing that your seizure happened with a friend nearby and not in the car while you were driving, as you said. I am so grateful that Heavenly Father was watching out for you and that you had such a good surgeon and so many people praying for you! You certainly have lots of friends who want to see you return to full health. You are doing a marvelous work and helping so many people. I will consider it a privilege to pray for you as well.
    361 days ago
  • MAW_OH
    Thank God and your Medical team, family and all who got you through. Praying for you continued recovery.
    361 days ago
  • GAILITCH
    Thank you for trusting us with your story. I am praying for you-- you have given us all such gifts of friendship, mentoring, motivation, and community.

    Please take care and know that we are with you, Chris (and your family) in spirit, longing for your full recovery!

    emoticon
    362 days ago

    Comment edited on: 10/20/2018 9:03:02 AM
  • no profile photo ELLARU
    God bless you, Chris and your family. Thank you for sharing your experience and I pray for your full and complete recovery.
    362 days ago
  • FLUTTERFLI
    We were away for over 2 weeks~ camping. Just got on the PC today & saw your email with the update etc. WOW, You sure have been through it all. Prayers are coming your way & for your family. I know God will bring you all the way back, He brought you this far. Just listen to your Drs. and your wife. ; } They know what they are talking about. ; } Prayers for a full & speedy recovery SP needs you & a whole lot of others do too !!! ,
    KEEP SPARKLING !!!
    Love ya', Flutterfli emoticon emoticon emoticon
    emoticon emoticon
    362 days ago
  • DEBBIEWEBBIE4
    So glad to hear you are okay and hope your recovery goes well. Sorry to hear you had to go through this. Prayers!
    362 days ago
  • NOT2OLDJUDY
    Chris, thank the good Lord that you are experiencing such a positive outcome with your surgery and recovery. I'm now 4 years post op with a benign meningioma in the suprasellar area of my brain. Mine was discovered when I lost the vision in my right eye from the tumor pressing on the optic nerve. Thank you for sharing your story, there is still so much not known about this. We are survivors, and we are warriors.
    May God continue to bless you.
    362 days ago
  • PCSPEER
    I m so happy you re better. God bless you and get well soon!!!!
    363 days ago
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