2 year tumorversary

party of 5

It’s been exactly two years since I was diagnosed with a brain tumor. Happy birthday Beni (that’s the name of my daughter, not the tumor)! Making it two years without growth is an important milestone. I had a clean scan about a month ago, purposely timed after the birth of our third child. I didn’t want potential bad news ruining another child birth.

When Armi was born, I finally felt the pure joy of bringing a child into the world. Most people get this every birth and have no idea how lucky they are. It was probably the most happiness I’ve ever felt in a single moment of my life.

I know people like to know how I’m doing, so here’s an update.

Physically – I’ve been working out twice a week for the last few months. I can see a notable difference in photos from a year ago – I just looked sick before. Now is the first time I’ve felt 100% in 2 years. It’s amazing how my strength was totally wiped out by surgery, then radiation. Surgery affected me mostly b/c I couldn’t swallow for a week so I was basically starving and lost 20 pounds. Radiation was a slow deterioration of my energy that easily lasted over a year.

I still don’t hear well out of my left ear – only problematic in noisy spaces (aka Porch headquarters) and the fact that I always used to hold the phone up to my left ear – can’t do that anymore.

My right vocal cord seems to be doing fine on its own. My voice comes and goes on days when I talk a lot which generally isn’t a problem since I don’t like to talk.

I still get dizzy any time I look up or turn quickly.

Nothing prevents me from doing the things I love in life.

Mentally – Mostly good days now. Still can’t go a day without thinking about it. Hardest part for me is talking about the future. Even as soon as “next year” and I have to wonder to myself “will I be here?” It’s hard to feel honest and talk about when my kids are teenagers, or when they get married, etc. Part of me thinks I’ll make it and part of me thinks I won’t. I fully expect to need surgery and or treatment again in the future, so every check up that’s what’s going through my mind.

It’s draining to be confronted with your mortality on a daily basis.

Every time my son Jett is asked to make a wish he says “I wish my daddy didn’t have cancer.” Makes me cry every time. He can’t possibly understand, but I think he does. Those words make me so appreciative and sad at the same time.

I have been reticent to look at any silver linings throughout this whole thing, but even some good can come out of something so terrible. I think I’m a better husband and father now and for that, I can be happy.

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Latest MRI is clean

Every time I get a clean MRI scan I feel like I’ve cheated death a little bit. Something always happens between scans that makes me feel sure the tumor is growing and somehow it’s always as the scan is approaching.

This time it was pain behind my right eye. Weeks of pain, a blind spot when I was driving, but the scan is clean. Pain is likely due to a scratch, but the optometrist couldn’t tell for sure.

I’m going back again in 4 months which is great news primarily b/c Kelsey will have already given birth. When Jett was born he needed a procedure on his heart within hours, with Beni I had just been diagnosed with brain cancer. We’d both like to have a nice, normal, fucking boring, birth for once. This baby has already been cleared from heart conditions so we’ll see how it goes. We aren’t exactly the model family when it comes to health.

Last week we went to the ER at 2am with Jett b/c he was having trouble breathing. He scored a 10 on arrival which basically means he could have been moments away from turning blue. Turns out it was either this nasty enterovirus d68 or asthma. He’s fine now so we think it was the virus, but we’ll only know for sure if it doesn’t come back.

We’re far from healthy but besides that doing great! Love the new neighborhood we’re living in, still getting settled in. Jett and Beni both do things every day that surprise me, make me proud, make me laugh, and often all 3 at once.

Random thoughts and a few announcements

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It’s been several months since my last blog post. I forgot to pay for my old domain, oops. I thought it was on auto pay but clearly have a lot going on. So, if you want ronniecastro.me – it’s available. Sure to be swooped up soon. I’ll stick to the free domains moving forward.

So first, a few announcements and then random thoughts. We bought a house, I got another tattoo and Kelsey is pregnant. Kelsey won’t let me post a picture of her beautiful belly yet, but here are the other two.

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Tattoo is half done, I get the rest done next month and then I’ll take a better selfie.

Random thoughts over the past few months.

Cancer is a mind fuck. It doesn’t permeate every one of my thoughts anymore but I probably think about cancer 20 times/day. That sucks.

Jett just turned 3. His birthday wish: “I wish my daddy didn’t have cancer.” Yeah, my 3 year old knows about cancer. That sucks.

I played basketball for the first time since my surgery a few days ago. I couldn’t focus for most of the game, like literally couldn’t focus. You don’t realize how much turning is involved in basketball until you get dizzy every time you turn. I have to teach my brain how to deal with this – I’m determined to do so.

On a related note, I find random bruises on my body which I can only guess is from running into things. Most are desk height.

Seattle Brain Cancer Walk is coming up. If you’re local, drop by and walk with me. http://www.braincancerwalk.org/

Some people might be wondering why Kelsey and I decided to have another child given everything going on with my health. I certainly thought when I was diagnosed there was no chance we’d have another kid. There’s two things that changed my mind. 1, Kelsey is such an amazing mom she’s probably worth 2+ average parents. Seriously. Our kids are so lucky. 2, my kids are awesome. If you’ve never been around them, they are quite the treat. Energetic, social, kind (Beni is working on that, but Jett is a gentleman now), crazy smart, and endless amounts of emotion (more positive earlier in the day). How could we not bring another amazing person into this world? It felt pretty selfish of me to not have another child.

Something people may not know. ~5 years ago Kelsey and I started the process of adopting a child from Ethiopia. After living overseas in 3rd world countries, it was something we felt compelled to do. We were on the waiting list, just waiting for the call that we were next. Then cancer happened. Long story short, the Ethiopian courts would likely not allow us to adopt but we wouldn’t find out until we were there and had met the child.

A tough few months just got better…

I haven’t posted since I was halfway through radiation. The 2nd half was tough. The last few weeks were the first time I ever felt like I was dying throughout this whole process. Radiation has left it’s toll, mostly on my hair. The back of my head has been mistaken for a few things, here they are in popularity order:

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1. a 3 leaf clover. I can’t tell you how many times people have asked me if I shaved my head in the shape of a 3 leaf clover. Even people that knew I was going through radiation. Seriously?

2. a snow angle. This one is cute, mostly from little kids.

3. Notredame fanatic

I was much happier when it was just the scar and I looked like a badass. Now I just look like a freak. It’s bothering me more than I would have thought.

My energy is still not fully recovered, but it’s good enough to keep up with Jett and Beni most of the time so that’s good enough in my book. I even managed to take a trip to Cali to see my family and flew with Jett by myself. It was the last of three roundtrip flights in the span of two weeks. It pretty much wiped me out.

But things are getting better. While I still have issues with energy, dizziness, nausea, and regulating my body temperature (this is a new one – Doc says it happens to people that have had brain surgery and radiation, they don’t know why), there are several pieces of good news that have come in the last month. First one is Jett was cleared by his cardiologist for two years. Kelsey and I both thought with the way things were going she was going to tell us he needed open heart surgery. It seems things may be finally turning around for us.

I had an MRI today where I was cleared for the next three months! Everything looked as expected in the scan. Every time I meet with the Doc, part of me expects him to say “You have x months to live.” Based on what he says, if that were the case, I’d probably know it before he said anything. He thinks I’ll feel something very wrong before they would see it in a scan. Somehow that’s a relief.

I feel a lot better heading into Christmas and New Years now and am looking forward to celebrating Kelsey’s big 33 tomorrow!

PS A friend of mine just beat cancer, way to fight Benji. I grew a ‘stache in November and every time I saw this hideous thing in the mirror, I thought of you 😉

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Halfway through radiation

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Here’s one more photo from the walk a few weeks ago. My bro and family definitely win the best family shirt photo contest.

15 sessions done, 14 to go. Week 3 has started taking a toll on me. It’s mostly fatigue, so nothing I can’t deal with, but it’s hard not being able to do as much as I’m used to, at work and at home. Yesterday, I got home, sat down on the couch and didn’t get up until I went to bed.

The discomfort of radiation hasn’t gotten any easier. On top of the claustrophobia, I’ve had a nagging cold for 2 weeks. So I’m either dripping snot down my face or not able to breath through my nose. I’ll get minor panic attacks that cause a hot sweat. Today, the mask was pressed so hard on my face that my nose was squished and I was forced to breath through my mouth. I think there have been at least 2 times where I would have passed out were it not for my head already being in a lateral position. To make matters worse, I can’t help thinking crazy thoughts while I’m strapped in the machine. I chalk it up to being in a vulnerable position, but here are some of the things I’ve imagined:

– the machine falling on top of me and crushing me

– my body being pushed off the table and hanging only from head

– the entire staff passing out and being left on the table for days

– someone stabbing me in the neck or side

Why someone would attack a cancer patient getting treatment takes some creative thought, but I’ve managed to come up with at least 5 scenarios. Clearly I watch too many movies and read too much Stephen King. The staff is awesome though so I should feel more comfortable than I do.

Kelsey came the other day and was able to take pictures, check it out.

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It may not look comfortable, but — uh, wait, it’s exactly what it looks like. A hard table with a sheet draped over it. Gotta be stable.

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My last thought before going face first is usually something like “I fucking hate this.”

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Here they put wax in my ears and cover them. Small risk the radiation could do some damage if they didn’t do this. Unfortunately, with little hearing in my left already, covering both makes it pretty quiet for me. I think they turn the music up pretty loud for me though so I’m not completely bored as I’m gasping for air.

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Face mask is in place and they start lining me up. The face mask isn’t just closed over my head, it’s tightened. Enough to the point to leave the waffle marks on my face and for the first few seconds, it feels like my skull is being pushed in. It’s really painful and then it just goes away. If I’m in there for 30min+, the pain starts coming back.

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I hope my cancer is dying a fast, painful death so I don’t have to.

Week 1 done

First week was harder than I thought it would be. But it was capped off with the Seattle Brain Cancer Walk so all in all, a very good week. Kelsey surprised me with a lot of unexpected guests and it was great to see everyone together in support.20130918_093452

This is what my face looks like after treatment. I have to wear a mask to stabilize my face during radiation. It’s white plastic and has little holes all over it to allow for breathing. They made it in two parts and when I lay down on the table, they seal the two halves together. It’s tight. The first time they put it on me, I thought I couldn’t breath. I have to calm myself every time and just focus on breathing slowly. The other thing is I’m laying face down so it makes it that much harder to breath.

The actual x-rays only last for about a minute, but I’m in the mask for 30-45 minutes. I’m also supposed to lay on my hands to prevent any additional movement. They have music playing so that helps, but I’m also wearing ear plugs so it’s muffled.

Treatment is 5 days a week for 6 weeks. Each day they zap my brain from two different angles. There are three angles total, but they rotate them around to avoid as much damage to healthy tissue as they can. This is also where proton comes in to save some more healthy brain. If I was doing photon, it would have to exit my brain and would almost certainly exit from my temporal lobes. That controls short term memory among other things.

Unfortunately, radiation has to enter somewhere so I won’t be without any loss. Hearing in my left ear sounds like the worst of it. I’ll have temporary side effects including fatigue (already feeling it week 1), hair loss (the mane is still looking good), loss of appetite (nothing yet, sort of). While I haven’t lost my sense of taste yet, I have already been feeling nauseous. Dr Rockhill says with the part of the brain we’re treating, that’s expected. It kicked in Thursday and last through the weekend so we’ll see how week 2 goes.

Here are some pics from the walk…

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It’s a great day

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Sorry for the lack of updates in a while, I have a good reason! For the past month, my start-up Porch has been gearing up for our big launch which is happening today. It’s been over a year in the works and I’m incredibly excited to introduce the product to the public today. Porch is a home improvement network that lets you see the projects that have happened in your neighborhood including photos, cost information and more. Check it out, it’s pretty cool. The experience is unlike anything else online today.

 

We all got to the office today at 5am in preparation for the big launch. Lots of Porch t-shirts being worn. Leave me a comment if you want one.

 

Building a company isn’t easy, and it sure doesn’t get easier with brain cancer and a newborn. The past month has really been fantastic though for many reasons and I have lots of stuff to share.

 

Kelsey will be doing another blog post. I loved reading everything from her point of view and I know others did too. So the post is coming, stay tuned.

 

The other big news is that I started treatment yesterday. After all my friends pulled together an amazing donation effort, it was an easy decision to move forward with my treatment. We’ll be paying out of all of our pockets since my jackass insurance company Lifewise won’t foot the bill. And there’s a few surprises for them coming that I can’t write about yet.

 

The giveforward fund was really fun to watch. I checked it every day and it was so cool to see when it would spread to different networks of mine and Kels. We have been pretty lucky to have had different experiences around the world…  Buenos Aires, India, the Bay Area, Seattle, Sydney, Brazil, Google, Expedia, Stanford, JBHS. It was absolutely a turning point in my state of mind. All of you are now part of the cure for cancer.

 

I’ll talk more about the specific treatment after my first week but here’s some quick info. It’s radiation, not chemo. I don’t feel a thing. If you’ve seen the Man in the Iron Mask, that’s a little what it’s like.

 

It’s hard to believe everything happens for a reason when you have a terminal disease, but it’s hard not to also.

 

Freshman year at Stanford I’m matched with my future best friend, who happens to live in Seattle, which in 10 years will become a center for brain cancer research and cutting edge technology.

 

March, 2013. A month before the big C gets dropped on me, Seattle opens a Proton Therapy Center. It’s only the 12th one in the US.

 

1983, my family moves to the US from Cuba. Does the tumor get caught in Cuba? I don’t know. But I bet the guy doing surgery there isn’t as good as my guy.

 

Last year, we move from the east side to the west side of Seattle and change doctors to UW. Scheduling an MRI for a guy that can pass physicals no problem isn’t a given.

 

2004, Kelsey and I get married. Yes, we’ve almost been married 10 years! Every day she gives me reasons to live unlike what any other person would be able to. And our two children are the sweetest kids in the world and that’s all her.

 

Months before my diagnosis, my wife and I write a will and I get life insurance. I qualify at the elite level, which is basically the highest health segment. If I don’t make it, it’s likely the medical bills will be high but knowing my family is covered is a weight off my shoulders.

 

I don’t think I cursed once in this post, things must be looking up!

 

As always, thanks for following.

Guest Post: Kelsey Castro

It was Friday the 19th around 1pm, I had just put my 19 month old son, Jett down for his nap.  I love my son more than anything, but he is non stop and for my 9 month pregnant body, nap time was golden.  It was my only time to sit down, rest my legs and just veg out. I heard the front door open and got so excited as I knew it was Ron and thought he was surprising me for lunch as he would often do. But when I saw him I knew something was off…really off.

I go to hug him and he sort of held my shoulders back and said, “You need to stay calm for the baby, just promise me you will stay calm.”  Huh?  I sort of nodded my head in slow motion as his words came out, “Kels, I have a brain tumor.”  Then I started screaming, the whole promise to stay calm clearly went out the window.  And that was the moment our life would change forever.

We hugged, cried, screamed (and I threw stuff as I have a bad temper) for over an hour.  Ron had gone in for an MRI of his brain just a few hours before as he had been having what he thought was sinus problems for months.  After two rounds of antibiotics our Dr finally recommended an MRI.  She called him while he was driving to get lunch, he pulled over on the side of the road and heard little to nothing after she said “You have a brain tumor.”  I peppered him with questions and all he could remember was that it was called an “ependa-something” and that he needed surgery in the next week.  So we got on the computer and emailed our Dr directly to send us the details and that’s when we realized it was an ependymoma which is brain cancer.  When I heard the C word, I felt sick to my stomach.  Ronnie is one of the healthiest people I’ve ever met.  He’s never had a broken bone, never been in the hospital, never gets sick and in general eats pretty healthy and exercises.  I was so shocked and sad.  The sadness was so overwhelming. Ron and I have been married nearly 10 years and he’s my best friend.  How do you keep going when you know that the person all your hopes and dreams are invested in could be gone?

The Dr told us that he would need surgery in the next week.  I was 5 days from my due date and we immediately started making plans for what would happen if he had surgery early that week and who would be in the delivery room with me or who would take care of Jett.  It’s interesting how when something so terrible happens and you have kids involved you can’t let it overcome you, you just have to keep planning, stay strong, and think of them.  So that’s what we did.  I called one of my best friends Alison who lives down the street and broke the news.  We were on a no phone call kick as she was our person to take Jett when we went into labor, so the only time you can call is if you are actually in labor.  That conversation was surreal.  I’d known for maybe 2 hours that Ron had a brain tumor and had to call one of my best friends to ask her to take his place in the delivery room if necessary.  It was a total mindfuck.

A few hours later Jett woke up from his nap and even though we had just gotten the worst news you can ever get, I had to pull myself together and entertain him until bedtime  It was the longest afternoon of my life.  I normally don’t let him watch too much TV, but that day Lion King was our savior and he thought it was Christmas.  At least one person in our family was happy.  I think back to that day and am so glad that his little 19 month old brain couldn’t understand what was going on.  If this were to happen now he would know instantly that something was wrong and would flip out, it’s crazy how much he has changed in just 4 short months.

After we put Jett to bed, Ron and I continued to research online and tried to learn as much as we could about adult ependymomas.  It’s a tough one to find info on as it’s really rare for adults, but really common in children.  We had an appointment with Ron’s neurosurgeon at UW scheduled for Monday morning at 8 am and we were dreading the long weekend of uncertainty.  But of course, another curve ball was thrown at us…I went into labor.

I should have realized what was happening sooner than I did.  After Jett went to bed I had my first moment alone in the shower and had a serious meltdown.  Not just a little cry, but one of those where you can’t breathe or catch your breath and might pass out cries. Yeah, so much for staying calm, Kels.  I had my first contraction during that episode and passed it off as a Braxton Hicks contraction. Later that night I woke up with a real contraction and within an hour was ready to have a baby, oye.  Stress induced labor is fast and painful and we barely made it to the hospital.  Luckily everything went well with delivery and our sweet Beni came into the world as perfect as can be.

Ron and I made sort of a silent deal to not talk about the news we had gotten earlier that day as we wanted to have at least a few hours to enjoy our sweet girl, but that is easier said than done.  After she was born, I wanted Ron to hold her and he did for the first 45 minutes as I watched them with tears in my eyes and thoughts running through my head that no new mom should ever have.  I just kept thinking will he be there to walk her down the aisle?  Or even worse will he be here next year to see her take her first steps?  The uncertainty is the most painful part of all of this.

We headed home Sunday afternoon and less than 12 hours later made the trip back to the same hospital Beni was just born at to meet our neurosurgeon.  The Drs knew I was 9 months pregnant, but were blown away to see that in the 48 hours since scheduling the appointment our daughter was born.  Beni was an angel during that first visit, she slept calmly in my arms as the Dr went through the terrible news.  Ron had a tumor the size of a racquet ball smack dab in the middle of his brain.  He would most likely lose his hearing on the left side which he did, it’s only at about 25%.  He would probably lose some swallowing capabilities, which he also did as he has a paralyzed vocal cord and pallet.  They talked about potential for facial paralysis, seizures, balance issues and the list went on. I sobbed into tissue after tissue as the bad news kept coming.  Things like 12 hour surgery, feeding tube, drain in his head, were thrown around like you could be talking about a Grey’s Anatomy episode.  When the topic changed to life expectancy I nearly threw up. Ron was so solid during all of this, which isn’t a surprise.  He’s always been the rock, the tough one.  When Jett had heart surgery the day he was born, I was a complete mess as the ambulance transported him to Seattle Children’s hospital and I was left behind at Overlake in Bellevue where I delivered.  He face timed with me the entire time keeping me calm as Jett was wrapped up in his baby incubator and transported to the NICU.  (Yeah, we have really bad luck with babies apparently).  But this is how Ron is.  He’s cool, calm, collected and takes in the facts before he reacts emotionally.  I’m the exact opposite, maybe that’s why we work well together. So during that first appointment he asked question after question while I cried.  I will just blame my patheticness on having a baby 24 hours before.

We learned that surgery would actually be a few weeks later as his case would need to be discussed by the UW tumor board and he would need a slew of tests done beforehand.  It ended up being 2.5 weeks of hell.  We were in this weird limbo of having a newborn and trying to be happy about that, but also living with immense fear of what was to come.  I also had some serious guilt issues.  Ron had complained of symptoms for over 2 years and I never caught on that something wasn’t quite right.  He was playing basketball two summers before and would come home and say “It’s so weird, everytime I turn really fast I get kinda dizzy.”  We attributed that to him being out of shape and that he just needed to exercise more.  He would say things like “When I’m driving I can’t focus on things that are moving outside of the car at all.”  I think I just shrugged it off like whatever.  Every time he would cough, sneeze or yell loud he would get a headache.  He wasn’t even able to give Jett a bath as he’d have to bend over and would get a really bad headache and we thought it was just sinus stuff, so again, we waited another few months to get it checked out.  Now I think back and am like seriously, Kels, you didn’t think something was up?  It just kills me.

Those 2.5 weeks dragged on and on and Ron got really depressed. Something like this hanging over you just eats at you and drags you down.  He tried to put on a brave face in front of the kids, but started sleeping a lot, crying often, and had immense guilt about what he was putting me through.  I took care of both kids by myself on little to no sleep and it left nearly nothing left for Ron, something I have terrible guilt about.  He needed me more than anything else and I just couldn’t be there and it broke my heart.  I was physically there, but always had two crying babies by my side.  I slept on an air mattress in the nursery as Ron needed his rest to be strong, but this only isolated him more.  Ron’s parents came to help and went to most of his appointments with him as I couldn’t take Beni to the hospital every time (it’s just not healthy for her), and they were a great help, but it’s not the same as having your spouse and best friend by your side.  The guilt I felt just kept piling up.  When all of this started I had no idea how much guilt one person could have about things that are out of their control.  I had guilt that Jett was getting so much less attention from Ronnie and I.  I had guilt that I wasn’t able to dote on Beni and be happy and take 5 million pictures of her.  I had guilt that I couldn’t spend the time I wanted to with Ron.  Our house was a very depressing and sad place to be.

The day before the surgery was Mother’s Day and we tried our best to just think about other things and hang with the kiddos.  But around 9 when it was time to head to bed as we had to be up at 4 am, that’s when Ron and I both really lost it.  The reality hit that it may be our last night together and that he might actually die in surgery.  We barely slept and just hugged and cried on each other.  We didn’t even need an alarm for 4 am, everyone in the house was up, moving silently and methodically through the house, not talking as no one knew what to say.

The morning of the surgery was worse than any other part of this whole process.  I was alone with Ron in the prep room while they got IV’s ready, put markers on his head, did an MRI and we waited for 2 hours for him to be taken away.  We just stared at each other without talking much as we were both just barely hanging on. I walked with Ron while they wheeled him in the bed to the operating room, we held hands and then like that, it was time to let go.  I told him I loved him and he was gone. He kept going and they dropped me at the waiting room where I sat in the fetal position for 10 minutes screaming into my t shirt until my in-laws found me and picked me up off the dirty hospital floor.

Hope I can find the time to write about the surgery and aftermath in the next few days.  Typing with one hand while holding a sleeping baby makes things a little difficult.

3d printing and get well cards

My cousin Lizzie made these items with a 3d printer. Super cool. Gloves for the fight and #ronniestrong. I think 3d printing is pretty amazing. 11 years ago I did my senior project for Product Design on golf tees and I designed over 20 prototypes using a 3d printer. Lizzie and I geek out at every family get together, and it was really thoughtful of her to do this.

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These cards came after I got the tumor news. The high ones are safe from Jett’s grasp, but unfortunately some fell to his curiosity.

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Ways to help

People always ask us and it’s just not in our nature to accept help. So some friends decided to not listen to us and started a fundraising campaign: https://www.giveforward.com/fundraiser/yrv2/we-love-ron and we love them for it. We would do the same in their shoes and that’s ultimately why we have swallowed our pride and said ok.

Over 100 people have donated. Kelsey and I are moved to tears at the generosity and love that has been flowing from friends, family, and even complete strangers.

We’re still going to fight the insurance company as they should be the ones paying for this. And when we win that battle these donations will be paid forward.

“Thank you” somehow doesn’t seem like an appropriate response. Everyone is creating hope for us and there’s no way to pay it back, so we promise to pay it forward.

Here’s the 2nd way you can help. Jeffrey Roe is a VP at Premera Blue Cross and the CEO of LifeWise, my heath plan provider. His email address is jeffrey.roe@premera.com. Please only send constructive messages. I’m sure a few hundred messages would go a long way. He actually responded to the email I sent him already. Here’s the reasoning they gave us in the appeal for denying the coverage:

“This decision was based on the plan language and medical policy, which specifically excludes benefits on any service or procedure that LifeWise determines is experimental/investigational.”

Loma Linda built the first Proton treatment center. In 1990. They had 15,000 patients by 2011. http://www.protons.com/protons/who-we-are/about-the-proton-treatment-center/index.page

That’s the longest investigation/experiment I’ve ever fucking heard of.