I like my doctor – Bob Rostomily – which is good considering my life will be in his hands, literally, but I was encouraged to get a 2nd opinion. It’s normal practice, doctors don’t get offended, and you should feel good about who is doing your surgery.
So I met with Dr Sekhar who actually trained Rostomily for 6 months, in addition to Dr Harsh, who was another guy recommended to me that works down at Stanford. I figured if I was getting a 2nd opinion, go with the guy that teaches others and is world renowned.
He basically confirmed everything I heard the first time around which is essentially go in, get as much of the tumor out as possible without causing damage to anything important. Hearing it a few weeks later, I was able to digest more of it and in general feel more comfortable with the whole procedure. I never expected to change surgeons but one comment really solidified that for me.
Rostomily likes to take his time. Someone else in neuro also made the same comment to me. The surgery will likely be twice as long than if I had gone with Sekhar. I know there are pros and cons to both but slow just feels right to me. Sorry Kelsey and parents! They’ll be in the waiting room for as many as 16 hours and it’ll feel like the blink of an eye to me.
Yesterday I met with Rostomily and his team to go over the procedure a little bit more and hear about the potential risks. He’s been doing this for 20 years, specialized in this part of the brain, and he’s still only done 12-15 removals of the kind of tumor I have. Sekhar does every removal of this kind at Harborview, and that’s only 20 of them in the last 30 years. I have an incredibly rare tumor. Yay.
Part of the rarity means more unknowns. The list of potential risks is probably no worse than any other brain surgery. Here they are in no particular order with other random info I got…
He doesn’t expect to be able to remove the entire tumor. So that leaves the door open to additional surgeries, and definitely radiation.
Radiation won’t start for at least 4 weeks after surgery to make sure everything has healed and my body is ready for it. This could mean chemo, really depends on the pathology report and the success of the surgery.
They have to remove part of my skull bone to get in, if they can’t put it back, I’ll get a titanium plate instead. I’ve requested adamantium and am still waiting to hear back from Wolverine.
They may have to take a piece of fat from my abdomen to put in place of the tumor after it comes out. I don’t remember exactly what it’s for, make sure stuff doesn’t swell or something – I started thinking about 6 pack jokes and got distracted.
I’ll have a drain put in (probably) to help with drainage. It’ll be in my right frontal lobe where it’s pretty low risk to do any damage. It’s a precaution, but they’ll likely do it and as long as I have the drain in, I’ll need to be in ICU. Probably 48 hours. If my brain doesn’t drain properly, I could need a more permanent solution where it drains down into my belly.
The tumor is growing around several cranial nerves so here’s what I could lose – facial control, hearing in my left ear, ability to swallow (would need a feeding tube), vision issues. If I have any of these problems, they could just be temporary. I may need help with a speech therapist after and potentially rehab.
I may wake up with the breathing tube still in – ugh, brutal.
My new baseline won’t be measured until 3 months after surgery. Scar tissue and swelling can look like tumor cells in a scan so you have to wait a while before you know how successful the surgery was.
There’s no guarantee I’ll get any relief from my headaches or dizziness from removing the tumor. I doubt that’ll be the case since I was fine a while ago when the tumor wasn’t as big, but man, that was a bummer to hear. I was assuming that was a given.
Day of surgery (the 13th) I’ll get up at 4:30am, shower, twice. Arrive at the hospital at 5:15am, get a couple of IVs put in, get an MRI (they’ll do the scan with some fixtures on my head to help aid in surgery in knowing where to cut), MRI should only be 30 min this time, and surgery starts around 9:30/10am. When I get out they’ll do a CT scan to look at my brain arteries – stroke from a blood clot is another potential risk.
That’s about it. Not sure if I’ll write again until post surgery and it’ll probably be Kelsey giving updates.
The support from f&f has been amazing. My parents flew up from LA as soon as I got the news and my mom is staying for as long as we need her. Local Seattle friends have been bringing dinners to us which has made things easier for us.
There’s no way to know the exact number, but I’m pretty sure there are thousands of people praying, sending good vibes and thinking of me and my family right now. That’s powerful stuff. It’s been a hard few weeks. I’ve been very depressed, detached and I’m sure a downer to be around. And then I’ll get a card or a message from someone I haven’t heard from in years, or someone I talked to the day before, and it’ll lift me up a bit. And every bit helps.
Thank you.
Vidya Jakkaraju said:
All will be fine even before you know it Ronnie! All our prayers are with you and your family!
And I shall look forward to recovery updates and ‘All is well now!’ update from YOU! 🙂
Good luck!
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Ciara said:
You are an exceptional person..I had to laugh at the ‘fat from your body’ to replace the tumor..em..do you HAVE ANY FAT??? 🙂
I will be thinking of you on the 13th for successful surgery..you are in the best hands….keep doing what you are doing!!!
Peace and calm to you as you go through this!!!
Ciara
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Caro Piber said:
Ronnie, I’m amazed at the way you are handling this and I admire you for your positiveness and strength. No doubt you are a fighter and though a tough one, you´ll beat this one. I’m one of those prayers and I’m thinking of you, Kelsey and your babies. Mucha fuerza Ronnie! Abrazos 🙂
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Kristina said:
I cried reading this. You are so strong!!
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Rita Katona said:
Thinking about you and sending positive energy every day since I heard/saw the news on facebook. You are going to kick this tumor’s ass Ronnie. Lots of love to you and your entire family, xoxo!
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Shilpa said:
Hi Ronnie
our prayers are with you and your family. Wishing you a successful surgery n speedy recovery
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Brian Twigg said:
You are truly inspiring. Everyone is pulling for you and there is no doubt in my mind that this is merely a bump in the road of what is sure to be a long and happy life with Kelsey and your kids.
Our thoughts and prayers are with you…also…adamantium…nice call.
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Joan Davis said:
I’ll be praying for you on May 13. It sounds as though you’ve made a very brave, informed decision about your surgery, and have a good idea of the possible risks and outcome.
But you’re young–that counts for a lot–and you have chosen an ace surgeon, and every brain tumor is different.
Blessings,
Joan
15 year survivor of brain tumor surgery
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Matt Ochsner said:
Ronnie, your attitude and humor are an inspiration! I think cancer picked the wrong guy to mess with. Thoughts and prayers are with you and your family now and on the 13th.
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Naomi said:
I’ve been thinking of you and your family a lot. You’re one strong man. Now go kick this fuckers ass.
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Kent said:
Good luck Ronnie. We’ll be praying for you in Utah!
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Gonzalo Alonso said:
Ronnie, kick ass as u always do, truly inspiring strenght.
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Maria Murnane said:
Hi Ronnie, I played soccer with Kelsey in Palo Alto and met you just once at a tournament in San Bruno, but I wanted you to know I’m one of the thousands out here who are sending you tons of positive thoughts and energy!
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Susan Bowers said:
You know we are among the many praying for you. It sounds like you made a good choice for a surgeon. Slow to me means thorough an thorough is good. They have to tell you every possible negative outcome, but you are young and strong and I’m betting you amaze them in your recovery.
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Wendy (Hoeveler) ALexander said:
Ronnie – thanks for the updates. No words to say except I’m thinking of you all and pulling for you. I know the broader Google family is as well. Good luck on Monday – can’t wait to read your next post. xo, Wendy
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Tom W said:
Ronnie, it sounds like you’re in great hands, and are as prepared as someone can be. Try to have a few good positive days beforehand, and steel yourself to endure and conquer. Everyone is pulling for you, and you can do it!!!
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Jen Park said:
Ronnie, saw this through FB…power of social media, I suppose. It’s been a long time since the old Googler days while you were optimizing ads and I was catching fraudsters…sending prayers your way. Will keep following with updates!!! Lots of people are rooting for you!!!!
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Christy La Pierre said:
You got this Ronnie!!! Believe it!!! YOU GOT IT! It’s a mountain, you are the climber, and you are going to scale this thing like it was nothing and then stand at the bottom once the trek is over and think I DID IT!!!! I JUST KNOW IT!
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Carolyn mejia said:
Hello Ronnie,
You might not remember me but we went to high school together. You were in my younger sisters grade and we had ASB together. You were class president and I was ASB Vice President. I also thought you were a nice, adorable kid and very smart. So when I saw your post throught mutual friends on Facebook I couldn’t believe what I was reading. I immediately began to cry and thought why do things like this happen. I don’t have the words to express how utterly sorry I am that you and your family are going through such a tough time. Your posts are an inspiration and you have such a positive attitude. after readind your posts if anyone can beat this it would be someone like you. Congratulations on your new little baby girl and my love, prayers and thoughts are with you.
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Sara Wampler said:
Hey Ronnie – just wanted to let you know that I’m thinking of you and Kelsey. I can’t imagine how difficult this is for you, and obviously there really aren’t any words that will make any of this better. But I’ve always admired your grace under pressure, and I’m confident that if anyone can get through this unscathed, it’s you. Good luck, and I’m looking forward to hearing good news post-surgery! We’re all thinking of you.
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Patrick Ellis said:
Hey Ronnie,
It was great meeting you at the UW career fair and I’m really looking forward to working with you again in the future! I still can’t believe this has happened, but on the bright side it looks like there’s great hope for a successful procedure, and a healthy recovery. You’re obviously a true fighter – you’ve overcome great challenges and are incredibly successful. I have no doubt that you’ll conquer this obstacle too. I truly wish you the best though all of this. You and your family are in my daily thoughts and prayers, and I know the big man upstairs will guide you through this. Best of luck and I look forward to talking with you soon!
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Maggie (Ronnie's Mom) said:
My dear Ronnie, I’d give myself for you, but it’s not possible, I’d give you my energy, but I have no power of my own; I’d give you good wishes, which I have, but they could only cheer you up a bit and accomplish little. However, I know there is a Creator and Sustainer of the universe and His name is love and to Him I go every minute of my day.
He is all powerful and He is Jesus who loved us so much that He gave Himself to die for us and He did not remain in the tomb. I believe in Him who forever lives. He said to ask, and I do ask that it’d be His will to remove the tumor. Just as He created out of nothing, I ask Him to take this tumor and send it to the place of nothing away from your brain.
Jesus said ask and you shall receive, so my hope is in Him who can do all things. Therefore, not by me but by the power that raised Jesus from the dead, I command this tumor to leave your brain and make you perfectly healed. For the glory of the Father, the Son and the Holy Spirit. In Jesus’ glorious name I pray. Amen.
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Shuchi said:
Hi Ronnie!
I hardly know you.. We spoke on the phone once when I was looking for an MBA internship and you worked for Expedia. And then just about two months ago you sent me a mail asking me if I was still looking for a project and I had said that I was in the process of moving to Canada and that we should keep in touch.. This is not how I ever thought I’d hear next from you. My heart goes to your family especially wife and kid. Praying for you and for them. Hope I get to hear from you soon. God bless you!
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Jeanne (favorite mother in law) said:
Ronnie,
Our thoughts and prayers are with you and your family. If I could trade places with you I would, there is a lot of living left for you to do and this is just a hiccup to get past. I will be waiting by the phone to hear from Kelsey. “NEGU”- Never ever give up! All Kelsey has to do is call me and I will be there to help any way I possibly can. You are an amazing son-in-law, husband and daddy. I shouldn’t have to tell you.
From you favorite mother-in-law, ok so I am your only mother in law.
Kick some butt tomorrow. Love ya.
Jeanne
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Stephanie Robinett said:
Ronnie, we are all praying for you and sending you positive, cleansing, healing energy today!!
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Scott Austin said:
You are on the table as I write this. We’re all cheering for you and looking for any update we can find. Matt is posting them. Good luck.
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Vicky Fernandez said:
Ronnie! Just wanted to let you know that I have some contacts up there that are taking care of you and your beautiful family… Keep strong! We are all praying for you!! Besos para toda la familia Castro desde Argentina!!!!
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Mili Dutt Reddy said:
Ronnie you may not remember me from Stanford days but saw this on FB and wanted to let you know I am one of the thousands rooting for you. Sending you positive vibes and well wishes!!
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Carrie said:
been thinking of you all day, and thinking of you now.
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Marcela Robles (Dueñas) said:
Ronnie, I learned about your surgery through Rita. I’m in shock! I cried. I am praying for your speedy recovery. Much love to your Wife and Parents. Stay strong, you will get through this!
Love,
Marcela
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Jamie said:
We don’t know each other, except for Lindsay Hyatt, but you blog is so inspiring and calm under pressure. Ill be sending you my positive thoughts. You can do this.
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Susan Bowers said:
Thinking of you and your whole family, praying for you.
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