Well, fuck you Lifewise and fuck you cancer

Have I had several Jack and cokes? Yes.

Did I just pour myself a glass of wine that weighs a brick? Yes.

For you religious folk that have supported me thus far, thanks. You probably won’t like my language moving forward, and that’s too bad, but I just don’t fucking care anymore. It’s painfully obvious to me I have a limited time left on this earth and it’s simply not worth spending a minute being someone other than myself. And my real self likes to curse, a fucking lot, so it is what it is. Get past the semantics and help me on this journey or just stop reading.

So, why does this week suck? Let’s start a few weeks ago when I read through the details of my surgery, which I will post at some point, and found out that based on statistics, I have a 60% chance of living 10 more years.

Yeah. Fucking brutal. What would you do if you had 10 years to live? A somewhat fun hypothetical to play with friends, which is no longer hypothetical for me. 6 months to live, a year to live – no problem. Fucking travel, stay at home with my kids, spend 100% of my time with my family and friends. 10 years? Fuck me. Live life as normally as possible. Keep working, try to leave my family in a situation that doesn’t suck balls – meaning you don’t go crazy spending all your money because there are people left when you’re gone that will need it.

So 60% chance on 10 years, awesome. On top of that, 2 other shitty things have happened this week. 1, my insurance, LIFEWISE WASHINGTON, affiliated with PREMERA BLUE CROSS, has decided that the radiation therapy my genius doctor has recommended and approved is “experimental” and not covered by insurance. Seriously? If I was a pediatric case, under 18 years of age, it would be approved. But apparently being 33 with two young kids with brain cancer is basically a foot in the grave, so fuck me. And fuck you Lifewise. I’ve hired a lawyer and am entering the second phase of the appeal process. Yep, exactly how I envision spending my final moments. Fuckin-A.

2, I had a probe today. They stuck a camera up my right nostril, through my sinuses and down my throat. This is the third time this has happened. First time I had a couple of interns do it, it took them 3 tries and 3 nostrils before they made it down to my vocal cord. Second time I full on passed out. Luckily, Kelsey was there and caught my 1 day old brain surgery head from hitting the machine. The intern there was scolded for not acting more quickly. Although, to back him up a little bit, Kelsey really should have been a doctor. More lives would be saved if she had. 3rd time was a charm. Dr. Hillel is an absolute stud and had an amazing technique for going forward and backing out. There was a picture of him on the wall where he was examining a lion. I tried to focus on that and tried to not pass out, which seemed to help. Plus, he worked on a fucking lion – that’s pretty cool.

So, here I am. 10 years to live, on average, which is fucking bullshit. I have NEVER been average in my life and sure as fuck don’t plan on starting now. So I’m trying to not be phased by the whole “you probably have 10 years to live” thing. But numbers are what they are for a reason, and some of this bullshit will be completely out of my control.

Lifewise – seriously? Make the right decision. Proton therapy is not experimental. Interesting how black/white/simple the decision would be if the decision makers were personally affected. But most people don’t have brain cancer, and most people certainly don’t have the kind of fucked up cancer that I have.

And is it weird I feel a responsibility to fight for adults with ependymomas that will come after me and need the same radiation therapy? Because I can. Yes, I can afford a lawyer. The next sucker that gets an ependymoma may not. Don’t I owe it to him/her to help change this outdated policy? Just like all the people before me that had brain surgery and treatment for ependymomas went through all that shit so that I could get better treatment and a better outcome as a result of their experimentation. 20 years ago I’d be in a much worse place. I owe it to the people in the next 20 years to make it better.

I know I should probably be selfish and just think about me and my family, but it’s so much bigger than that to me. Of course my family is more important than anyone else, but there are plenty of families that are coming after me where this is going to matter. Collectively, this will mean more than just to me in my selfish view.

No tumor cells in my spine!

Got some good news yesterday – spinal tap came back clean. Two other updates.

My insurance rejected proton therapy as a radiation treatment which was expected. My doctor is appealing it, so now we just wait. Meanwhile my doctor said to just focus on not creating more tumor cells in my brain. Ok. I made that last part up.

It’s funny how much stuff I’m still learning about my surgery, effects and the days after it. For instance, yesterday my wife pointed out to me that my palette is paralyzed – the left side. I thought it was just the vocal cord, but the palette is also contributing to my difficulty swallowing. Food tastes the same, I think, so it’s not affecting that.

Lumbar puncture

I had a lumbar puncture today, otherwise known as a spinal tap. It sounds a lot worse than it is, but I still would never choose to do it – unlike the doctor that performed it on me. When he was a med student, and poor, he opted to do an LP for $100. I told Kelsey I might do it again for $1000, but not for $500. I figured it’d be worth a new set of irons, but not just a new driver.

An LP is basically like getting an epidural. I’ve seen Kelsey get two of them. When you’re in labor and in the worst pain of your life, getting an epidural ain’t bad. Plus, it’s a means to the end of your pain. It took about 15 minutes, there was a large needle involved and it was more uncomfortable than it was painful.

He removed a couple of tea spoons of spinal fluid and it takes only a few hours for the body to regenerate that much. The doctor that did it for me is really good at it. Normally you  have headaches afterwards but he was able to avoid that by using a smaller needle and optimizing the entry angle. I probably can’t explain it well, but the smaller needle means there’s less leakage after the procedure. What happens normally is the leak causes the brain to sag and you get a headache.

That’s done now and he told me there’s a 3% chance there are tumor cells in my spinal fluid. If that’s the case, then radiation treatment will encompass a larger area. I used to think 3% basically meant ‘not going to happen,’ but after getting a brain tumor, 3% sounds pretty high.

My odds of getting this tumor were 1 in 120,000 – or 0.0008%. Maybe this is a sign I should play the lottery more.

My son made me cry the other day – in a happy way. Ever since the laryngoplasty I had, I’ve sounded different. Better than I did with only one functioning vocal cord, but bad enough I heard the following comments “is this your new voice?” “is this as good as it gets?” etc.

Jett’s almost 2 and his bed time routine is pretty short and sweet. He used to like reading books and singing songs before going in his crib, but now, usually seconds after sitting in a chair to drink some milk he’ll point to the crib to go in. Well, the other night I got to put him to bed for the first time in months.

My voice is decent in the morning, but by the end of the day, I sound like a quiet, raspy, life time smoker. I was expecting a quick point to the crib when I started singing but Jett let me sing two songs and then actually asked for more.

So, as bad as my voice is (and my singing has always been bad), my kid still likes it and that’s all I really care about…

Moments of weakness

Last couple of weeks have been great – moments of weakness and periods of strength which is vice versa of what it has been. People still ask how they can help – we’re really ok for now…  but if you have a minute you can help my start-up! Our life savings is invested in this company so it’s actually meaningful. Right now all you can do is sign up for early access (just need an email) and invite your friends. Thanks for your support!

http://porch.com?kid=1T6PD

40% chance the tumor grows

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.

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First walk after getting home from the hospital. Needed a walker for a week or so. Porch.com ride intentionally in the background.

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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.

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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.

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Birthday cake with mom, bro, Kels and the kids.

2 weeks post surgery

So much has happened it’ll be impossible for me to remember everything but I’ll try to stay in chronological order.

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There I am with markers on my head. They did the MRI with these things on so they could know exactly where to slice and dice. I remember this part but it’s pretty fuzzy. I do remember being in the MRI machine and hitting the alarm button because I started freaking out. Luckily they got all the images they needed to before that happened. Side note: I came back for an MRI post op and I had an oxygen tank under my bed. You’re not supposed to have anything metal in an MRI machine. Once they slid me out, I heard a loud “thud.” That was the tank falling down. I’m glad I wasn’t still in there.

I woke up the morning after the 18 hour surgery with a breathing tube in my mouth. There were people all around the bed, Kelsey was there and says I just stared at her. I surprisingly stayed calm while they pull the tube out. I remember asking why I was upside down over and over again. I was lying flat but something was up with my nerves that made me feel like I was being held upside down. I had a tough time letting that one go, I must have asked 10 times why I was upside down.

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Here I am in the ICU where I spent the next few days.  They checked my vitals constantly, and then later hourly, and asked me to do things like smile, puff my cheeks, shrug my shoulders, etc to make sure I could still move both sides. I could understand questions clearly but it took me a while to respond, it was hard to get my brain to work again. I could tell I was going to be fine, everything was just slow. Also, my left vocal cord is paralyzed, so I could barely get a whisper out and swallowing was all but impossible. A few nights in the ICU were really hard. I couldn’t sleep well despite the pain medicine and somehow the call button on my bed didn’t work. No call button and no ability to yell meant no help. I tried whispering for help several times to no avail. Later someone told me the bed was unplugged and that’s why the call button wasn’t working. Awesome.

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60 staples. Just had them removed yesterday. Not pleasant. I think when I was being rolled around outside the operating room I heard something like “it’s not everyday you see a bilateral craniotomy.” Felt like some docs were trying to scrub in just like on Grey’s Anatomy.

I’ve been home for a few days now, every day gets better. I can move around, go up and down stairs, eating a bit more. Oh, here’s some fun facts. Pre op weight = 180 lbs. Weight 2 days ago = 168 lbs. No bowel movement for 12 days. That’s right 12 days. Post bowel movement weight = 165 lbs. I’ll save the gory details, but 3 pounds! That’s a lot of poop.

Pathology. Grade 2 ependymoma as expected. Meeting with oncologists next week to figure out start time of radiation and chemo.

Surgery Wednesday to “fix” my vocal cord. It’s a quick surgery. They basically inject me with Botox and it closes up the space in my throat making it possible for me to talk and swallow normally. If there’s any extra I’ve asked they touch me up around the eyes and forehead. There’s an outpatient procedure where they perform this which I tried, but I passed out. I don’t know if it was the probe going up my nose and down my throat or the two needle injections directly into my throat that did it. I had a vasovagal response they think. Not the first time that’s happened to me. I was donating platelets once and the technician said the same thing to me when I passed out.

Ok, that’s all for now. Big shout out to the best wife in the world who is dealing with a newborn, a kid entering the terrible 2s, getting no sleep and still taking care of me. And my parents who have been helping with everything. This would be so much harder without them.

2nd opinion

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.

Want to see my brain?

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It’s not the best image I have, but it’ll do. The spinal MRI and CT produced better pictures but I wasn’t offered copies of those. As I was finishing the first MRI they told me I could get a copy of the scan and I was like “cool!” – what an idiot I am. I wonder if they knew they were handing me photos of my tumor, they must have right? Probably why my doctor called as I’m driving back from the appointment.

Anyway, I’m not a doctor, but I’m pretty sure that black smudge towards the back of my brain is not supposed to be there. I don’t have more info since my last post but thought people would be curious what “it” looks like, I know I am. I imagine it’s hairy with small,  unformed teeth.

I haven’t looked up the emotional stages of finding out you have a tumor but I bet it goes something like disbelief, anger, disbelief, sadness, acceptance. I never got angry, not sure why. It pisses me off when people tailgate, or when people bring their whole families to Costco and leave their cart blocking an entire aisle, but for some reason the tumor doesn’t make me angry. Maybe it’s because I get a headache any time I scream. That home Seahawks game against the 49ers? Yep, headache the entire game.

My acceptance has come with humor. Seeing as how the MRI makes me look like a Terminator, it brings back another memory of Arnold saying “it’s not a tumor!” I’m not sure if it’s less funny or funnier now when I say it – I’m going with funnier.

Other funny things going through my head… the doc has been testing my hearing, vision, all sorts of things and it’s made me wonder how much I’ve been held back by this thing. Could I have supersonic hearing? Can my catlike reflexes be even faster? They’re going to shoot me up with radiation after the surgery – xrays, gamma rays. Is it weird I’m hoping I turn into the green hulk?

***

I have this recurring nightmare a few times every year. I’m back at Stanford in my final quarter and I’m worried about failing a class. Sometimes it’s a paper I didn’t write or a test I didn’t study for. Right when I wake up I feel this dread of “oh no, what am I going to do?” And then a few seconds pass and this intense relief floods me as I realize I’ve already graduated and tests are a distant memory. The tumor is like that nightmare without the relief.

 

Wow, my friends are awesome

Thank you

I knew people would be nice hearing about what my family and I are going through, but I had no idea it would be this good. It has been incredible how many people have responded with kind words, encouragement, offers to help and more. It absolutely makes a difference.   Thanks for sending messages to Kelsey too – this may sound weird, but this has been harder for her than it has been for me.

Every morning when I get up, the first thing I do is read new messages. Every one makes me feel a little better. Some are from family, some from friends, some from friends from years ago, some from total strangers. I’m uplifted, motivated, and compelled to come out of this ok even more now. The most surprising thing has been people’s confidence in me to beat this thing. Way more confidence than I had when I first heard the news. I feel like I’m passing out of the initial shock now. I’m understanding more and it’s helping me feel better about this whole thing.

I know people are curious and have lots of questions so I’ll do my best to share what I know. I’ll gladly sacrifice privacy for added words of encouragement.

Tests I’ve taken this week: hearing (passed – which means the nerves controlling this in my brain are unaffected, which is good), spinal MRI (I don’t have official word, but I’m feeling good about it), echo cardiogram (they’re not worried about my heart, just testing to see if I can do a seated surgery vs face down). I have a CT scheduled for Friday and current plan is surgery on May 13th with some pre-op stuff the day before.

So this is my life for a while, then hopefully just another story with a happy ending to laugh and cry about later.

I have a brain tumor. Fuck.

And it’s cancer, probably. It’s been a tough few days for my family. On Friday, I went in for an MRI after dealing with sinus headaches and some dizziness over the last few months. Doc calls me on the way back from the appointment and tells me I have a brain tumor. Seriously? I’m 32, have little kids, this can’t be happening.

Friday night, my wife goes into labor. She’s only a few days away from her due date but I’m sure the news 8 hours earlier triggered it. So, now I have a daughter, which is nothing but awesome, but I can’t help thinking about her future and mine, and how much they’ll overlap.

Today is Monday. I met with Dr. Rostomily at UW who specializes in base of the skull tumors. I know more now, but still not enough. I have to undergo a series of tests over the next week to fully evaluate what I’ve got. In 2 weeks, I’ll have surgery. It’ll be a 12 hour surgery, I’ll stay in the hospital for a week and then I’ll get radiation treatment after.

I’ve shared the news with some people but not everyone. It’s a strange thing anyway – “hey, check out photos of my gorgeous daughter and by the way, I have brain cancer.” Every conversation is emotionally draining for me. Sadness in their voices, questions I don’t know the answers to, awkward silences – it’s a little too much sometimes. So, to my friends and family I haven’t talked to, sincerely sorry but this is what you’re gonna get. I’ll give as much info as I know here…

Most common question “are you going to live?” If it’s at all beatable, I’ll beat it. At this point, it looks like it is, but they’re still doing more tests. I have a spinal MRI, ecco and a slew of other tests this week. And I likely have to do an angioplasty. I have a vague recollection of what that is from one of those doctor shows, but I haven’t looked it up b/c I may not have to do it and I feel like it’s probably going to suck.

The tumor is an ependymoma. I have my MRI scans where you can see it. I naively asked for the images thinking it would be cool before I knew what was in them – in retrospect, not as cool when you have a life threatening tumor you can see. It’s 4cm on the longest side, so a couple of inches. It’s a big tumor, but it’s not growing in my brain matter, it’s growing in some empty space near my cerebellum. If it grows more, I could lose my hearing, facial muscle control, balance (like I can’t walk anymore), or I could get hydrocephalus. Right now the tumor isn’t cutting off any of my CSF (cerebrospinal fluid) which is what could cause hydrocephalus.

Thanks for all the texts, positive thoughts and prayers.