4 weeks has never felt like 4 months as much as it does today. I’ve been avoiding writing this post. I was hoping I could have a final blog post and just say I’m all good, it’s all over and I can go back to living my normal life. But that doesn’t appear to be my path.
How am I doing? It’s hard to swallow. Two of my favorite foods – steak and sushi – are now extremely difficult for me to eat. My left ear is at maybe 25%. My voice is nasally but better than the whisper I had before the throat botox I got. I’m not in pain, haven’t needed pain meds for a while. My head is numb in many areas. My balance is pretty terrible but I can go up and down stairs without holding the railing and I haven’t fallen over while walking! I walked 2.0 miles yesterday and hit a bucket of balls today at the driving range. I’m sleeping 7-8 hours a night in 1-3 hour segments. Melatonin really helped with that.
I’ve been reading a lot of brain cancer blogs lately. It’s amazing how 10 years can make such a big difference in what recovery looks like. I’m thankful I’m not the first to go through this so the doctors could improve over time and I feel for those that helped pave the way for medicine to get better.
One thing I noticed in a lot of the blogs – people really like naming their tumors. When you have brain cancer, you can do whatever you want, so I won’t knock the people that name their tumors, but I’m glad I didn’t name mine – mainly for two reasons. 1, I felt like naming it would make it more real and I wanted nothing more than to wake up one day and find out the whole thing was a mistake. 2, they didn’t take the whole thing out during surgery so I’d be left with a named deadly friend rather than just a deadly friend.
I didn’t know this until I went in for my radiation appointment, but when the radiation kills the tumor, it doesn’t go anywhere. So even if radiation is successful, the tumor will still be there. I hadn’t thought about it, but it makes sense. Not like the tumor will drain out of my brain or anything.
There are 3 types of radiation that the doctors told me about. “Gamma knife” which is a highly concentrated blast at a small area. And then photon and proton fractional radiation. Doctor speak here: http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation. In simple terms, gamma knife is great if you’re confident you know exactly where the tumor is. But if you miss, the tumor grows. Photon and proton are very similar. You radiate the entire area where the tumor used to be. That means a larger area than post surgery tumor, but it increases the odds that you’re hitting all of it. The big difference between photon and proton is photon has an exit path, proton doesn’t. So you target the entry with photon but it has to leave the body and when it does, it’s hitting stuff you don’t want it to.
Proton is newer. In 2001, there were only 3 machines in the US that could do this. Now there are 12 (I think) and lucky for me, Seattle got one in March of this year. Proton therapy is thought to have less long term side effects. There is no conclusive data b/c there just haven’t been that many people to go through it but it makes sense considering it only hits what you want it to hit.
Radiation will be 5 days a week for ~5 weeks. I get hit with x-rays for a minute or so and in and out of the hospital within an hour. Most of the time is setup to make sure they’re hitting the right area – measure twice, cut once. The docs know how much radiation certain parts of the brain can take, so each day gives me just enough to not completely destroy the good cells. Normal cells regenerate, tumor cells don’t. I’ll have fatigue, hair loss and loss of appetite. Fatigue will get worse during the week and will get cumulatively worse by the end.
The big news is that given how much tumor I have left, for the type of tumor I have, given that I’m an adult (since ependymomas are more commonly found in kids), there is a 40% chance the tumor grows after radiation within the next 5 years. And then at that point it’s either more radiation (take our chances with gamma knife) or more surgery to take more tumor out.
I’ve flipped enough coins in my life to understand my odds.
On the bright side, no chemo. Apparently it’s not very effective for my cancer.
I’m getting a spinal tap June 17 to rule out that I have any tumor cells in my spinal fluid. I’ve had a spinal MRI that was clean so there’s no reason to think there are some tumor cells lurking somewhere but radiation would be different if there are, so the docs want to double check.
To end on a happier note, today is my birthday (33), I’m headed back to work tomorrow to try and start getting back into a normal routine and here are some pics from the last few weeks.
First walk after getting home from the hospital. Needed a walker for a week or so. Porch.com ride intentionally in the background.
My scar. Dad photo bombing. Friends say I should go with “shark bite” since that would make for a cool story. When you start talking about brain cancer, some people tend to freak out.
Beni. I know I’m biased, but my 7 week old daughter is beautiful! And she rolled over today. Twice. So we are totally screwed. Jett didn’t do that until 3 months.
Birthday cake with mom, bro, Kels and the kids.
Merisa Heu-Weller said:
Happy Birthday, Ronnie! I know this post was hard to do but I’m so glad you did. We’re here for you, cheering for you, celebrating with you, and praying for you. To quote a mid-90’s rap song — “rock on with your bad self”!
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Jitendra said:
Beni and Jett will be mighty proud of you whenever they read these posts, Ronnie.. Their father’s a real hero!
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Carrie said:
you’re the man ronnie! take it easy when you go back to work, especially when you start radiation. rest as much as you can. happy birthday, you are doing great!
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Santiago said:
Happy birthday Ronnie! Keep strong and optimistic, you are doing great thus far. Evidently you had too much brain to begin with, man!
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Maggie (Ronnie's Mom) said:
Today I’m leaving Seattle and back to California and checked out your blog. I like to see the way you think and the way you analyze and look at life. You have certainly much to be thankful for so I join in the thankfulness. When we have a problem we tend to use the time machine to go back and try to see how it would have been different. However, in this case there is no such thing. This happened when you were at the right place at the right time and the future only God knows.
I’ve done a lot of thinking too and came to realize why God doesn’t allow us to know the future because, if we had known that this was coming to you at 32, we would have been in fear all these years and have not enjoyed all the time while you were growing and all the things you have done; all successes and happy moments. Maybe worse, we would have tried to do something about it when you were much younger without the advance of medicine and technology. The result could have been no Kelsey, no Jett, no Beni. That’s one of the reasons why the future remains veiled for us.
So, forget 40% chances. With God all things are possible and with Him one is majority. After seeing the video taken while you swallowed and how all things work together inside in such a perfect harmony, I could not cease to see the marvel of design in every part of our body and I was more sure than ever of this Creator who masterfully designed everything to perfection. This intrinsic complexity needs a designer. No way this just happened on its own even if we add trillions of years.
I will pray and many others will too and with expectant eyes we will continue to look up to where our help comes from. And I ask God for everything. I want everything restored for you, even the hair that you haven’t lost, so here we go believing and checking for your complete healing in the mighty name of Jesus, the only One who has conquered death.
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Marcela Robles (Dueñas) said:
Ronnie, you are an inspiration. Keep pushing forward. My family and I will continue to pray for you!
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Trevor Towner said:
Hey Ronnie,
Haven’t seen you since junior high (doesnt feel like that long ago) but I have been following your blog posts. Thinking of you and your family often. Take care buddy
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Jack Scripps said:
Ronnie, I am not certain if we have met. I am Justin Scripps’ father. Justin shared your story with me, because in 1990, my wife was diagnosed with two brain tumors. Neither was cancerous, but as you know, inside the skull there is no room for a tumor to grow, so cancerous or not, they were a big problem. One was surgically removed. The other just sits there. She is fine today — deaf in one ear, but otherwise fine. We found the National Brain Tumor Foundation to be a great source of support and information. Holding good thoughts for you, your family, and your beautiful new daughter!
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Ronnie Castro said:
thanks Jack. Always nice to hear stories of people winning the fight
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Wendy (Hoeveler) said:
I continue to marvel at your eloquence Ronnie. You write in a way that so perfectly conveys your thought process and feelings (or at least that’s what I believe!). What an amazing skill. Thank you for sharing. I continue to keep you, Kelsey, and the little ones in my thoughts and prayers. Keep fighting.
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Ronnie Castro said:
thanks Wendy. I’m always worried about depressing people with my story but the honesty is really therapeutic for me
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Susan Bowers said:
Hi Ronnie, I’m glad you had a Happy Birthday and yes, Beni is beautiful and very bright eyed. I think you are doing remarkably! It’s fantastic to see the photos of you up and about, You look great and you are doing great. I prefer to focus on the fact that there is a 60% chance this thing won’t come back, but if there was a possibility, why didn’t the surgeon put in a zipper. Sorry, couldn’t resist. I do think you should go with shark bite, it is a really cool scar, but I’m betting you won’t see it when you finally get to grow your hair. It sounds like your doctors have really got the know how when it comes to dealing with this. I know you want to get back to work so you can feel like things are more normal, but do be kind to yourself and rest when you need to. You are young and strong and you will get to a point where you feel like your “normal” self, but it definitely won’t happen as quickly as you want, which is yesterday. One thing is for sure, you have a wonderful family and a whole lot of friends praying for you daily. We all want you well! Blessings to you, Kelsey, those beautiful children and your loving family. You are in our thoughts and prayers always.
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Ronnie Castro said:
thanks Susan. love the zipper idea! can’t wait to hear what my doctor thinks of that one 🙂
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Steven Adler said:
Ronnie,
You look so great and happy in that bottom picture! Happy to hear it was a good birthday and that you’re surrounded with such great people to make this tough time more manageable.
Steven
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