After a crazy ten weeks we are finally at a point of resolution for now. As a result of my scans last week my team at the NIH has informed me that the tumor in my neck is stable, and has not gotten any bigger since my first scan just over two months ago. This is really good news They have recommended that I sit tight for now, and then return to them for a follow up scan in March.
Seeing as I am not in any discomfort, and don’t have any issues at the moment, they think this is the best strategy. If it has gotten any bigger in six months we will look at surgery, or radiation, but for now the risks are not worth it to me.
It’s only been 5 weeks since my heart procedure so I am still being extremely careful and keeping my activity level to a minimum. I have a follow up Echo cardiogram in four weeks. Assuming everything is good with that I will be able to go back to living my life as normal, at least for the next few months. Even though there is still a huge amount of uncertainty with what will come down the road I am very satisfied for now. I would never say I feel lucky, but I definitely feel very fortunate for things to have played out the way they have so far. The outpouring of love, support, and generosity I have received during all this has given me an entirely new outlook on life. I will do my best to cherish every day from here forward. This will be my final update on all this for now. Onward
While at the NIH (National Institute of Health) this week I had a Dotatate scan which confirmed that my tumor is a Para-gan-gli-oma. This is good news because it means I am still ‘medically interesting’ to the NIH. I also had an MRI with contrast, various blood tests, and CT scans with contrast of my neck, chest, abdomen, and pelvis. As I mentioned earlier this week we knew that nothing earth shattering was going to happen but it was an important step nonetheless. We fly home today and will have a telemedicine call next week when all the scan results are back. Hopefully we will be able to make a decision on what we are actually going to do. Getting these scans was kinda the final step in our decision making process. While my choices are never too far from my thoughts I’m still very torn between surgery, radiation, or continued monitoring. Thank you to everyone for your messages this week, I really appreciated them.
While nothing earth shattering is going to happen this week it’s a big step for us. Today we are flying to Washington DC to go to the National Institute of Health. They specialize in the type of tumor they think I have which is called a Para-gan-gli-oma. They will do a scan on Wednesday to confirm this and then a bunch more scans on Thursday. It’s now been two months since I had a stroke, and one month since my heart procedure. Time crawls when you’re not having fun!! I’m very optimistic about this week, and I’m hopeful that we will have a clear road map by the weekend. I know I will be in lots of peoples thoughts and I appreciate it endlessly Do your best to not take your health for granted, even for today.
This is the mantra I have been repeating to myself over and over, and over again. As I take deep inhales I visualize my breath crashing into my tumor like waves into boulders, and with each exhale I imagine it being choked off little by little. Look at me and you have no clue what’s going on in my mind and body. I am at war with myself.
Physically I feel amazing but I’m not allowed to do anything. I can’t jump, hike, workout, or do any of the things I usually do to release my energy. I am a caged animal.
It’s easy to fight someone who’s standing in front of you. It’s even easy to fight with someone on the other side of the world. But what am I supposed to do against the faceless, invisible enemy who’s living inside me?I can’t physically beat him. I can’t outwit him with my words. I need a different form of strength and intelligence that I must cultivate from within. This is truly a game of patience, and fortitude. I didn’t choose to learn this lesson, it chose me. I am growing in ways I didn’t know existed, I will beat him, and I will continue to grow.
One more week till I go to DC to get more scans and hopefully some answers
It’s been three weeks since my heart procedure and overall I feel great. I have some random little pains here and there but I was told those would occur while my body adjusts to the device they installed. Other than that it sucks being on blood thinners (everything hurts) but all things considered I’m not complaining. I’m doing as I’m told and keeping exertion levels to a minimum. I wouldn’t say I’m used to it but I’ve accepted it as my normal for now.
I’ve also trying to accept the uncertainty of this tumor I have in my neck. Is it growing? Is it just chilling? Should I be worried? These questions are never far away and neither are the bottomless pits thinking about the answers. I’m doing my best to stay calm and just breathe when things start to race. I feel like I’ve taken my own self control to a whole new level and I’m extremely appreciative for that. ***Sequoia and I will be going to DC Sep 9th to get more scans. We should know then if the tumor is growing or not. If it is it will likely mean surgery, radiation, or both. If it isn’t it’ll likely mean we continue to monitor it and not take any immediate action. No easy choice, no ideal outcome. 2.5 more weeks in limbo.
The day after we spoke to Boockvar we had a call with Dr Liu who is based out of NJ. He’s also a very accomplished surgeon, specializing in Paragangliomas. At this point in time it’s strange to say that we are surprised by anything but he managed to give us a completely different perspective on things.
First he pulled up my MRI and began to go through it in detail with us. He talked about the three main types of Paragangliomas – carotid body, jugular, and vagal (very simplified)
The one I have is the Vagal one and it’s attached to my vocal cords. Dr Liu explained to us what the procedure would look like if we went the surgical route – how he would approach it, how his team would coordinate with each other etc. He explained to us that he views removing these tumors almost like hes disposing of a bomb which I thought was pretty cool.
After a lengthy conversation he presented the options that we had already been given
1- I do nothing in terms of treatment, continue to get regular scans, and monitor it.
2- I get surgery to remove it and accept the risks.
3- I get radiation treatment.
Up until now option 1 was my least favorite but after talking with him it’s now my first choice.
His recommendation was something like this:
“You’re a young guy, and you currently have no symptoms. You have no trouble swallowing, talking, eating, and are not in any pain. If we remove it you are very likely going to have issues with all of those things and you may never be the same again. I have nothing to offer you that will improve your quality of life, only potentially worsen it.”
Because of the tumors proximity to my vocal cords I could end up with a permanent raspy voice, or even worse, lose my voice. As scary as all the above sounds I was very appreciative of Dr Liu’s honesty. He also went into detail about how he loves his job, that he feels like he’s good at it, and he enjoys the challenges of removing these tumors. Having someone say that but then also turn around and recommend not to have surgery it a huge win in my opinion. He suggested we just monitor it, see if it’s growing, and make a decision from there.
He then referenced a scene from the movie Braveheart (link below)
So as things stand now we currently still have the above three options (Hold, Surgery, Radiation) all of which are dependent on if the tumor is growing or not.
We are now scheduled to go to Washington DC on Sep 9th for more scans.
My energy, thoughts, affirmations, and meditations, will now be directed towards the tumor not growing. It would be nice to be able to just keep an eye on it, not have the risk of surgery, or the annoyance of radiation.
It’s been just over a month now since all this started. In one sense it seems like it’s gone quickly because so much has happened but in another sense I feel like I’ve felt every painful minute of it. At the beginning I was very much reluctant to accept, or ask anyone for help, in any way, but I’m pleased to say I’ve gotten over that. A month ago I had the mentality of: ‘I don’t ever need anything from anyone’ and that has now grown into: ‘I have more support than I could ever dream of and I am very appreciate of it’ This switch in mindset has been monumental for me and as I said in one of my posts last week ‘if this were all to magically end today I would already be changed forever. I fantasize constantly about how all the ways I can pay forward the generosity and support I have received, but then I catch, and remind myself, that I’m not out of the woods yet and I must remain focussed. As things stand today I think we don’t have to stress about my heart anymore, just rest and let it do it’s thing. We have a phone meeting today with one of the many neurosurgeons we’ve contacted (update: we had the call, scroll to the end if you don’t want to read) and we are awaiting a call from the NIH to schedule a scan in Washington DC.
Clarification: The day after my procedure we had a call directly with Dr Pachek form the National institute of Health. He explained everything in detail with us and we felt pretty good about the call afterwards. Last week I said in my post that we had been denied surgery by them and there was a little bit of confusion on our end regarding that. They did not mean that the tumor is inoperable. I guess his surgical team at the NIH are primarily NET (Nose, Ears, and Throat) focused and because my tumor is so high up in my neck they think it’s a neurosurgeons job to remove it if I go that route.
He did say he thinks it’s extremely dangerous, and the potential side effects/long term damage should be something we heavily consider.
Following the call he said we basically have 3 options, all of which begin with going to DC to get a scan called a Dotatate There is still some speculation if the tumor I have is actually what they think it is and the only machine in the world that can tell them that without a biopsy is at their facility.
So we go there to get this scan (it’s looking like some time in September) then:
1- If it is a Para-gan-gli-oma they have offered to give me the radiation treatment there so we would potentially just stay there for six weeks or so following the scan.
2- We take the results from the scan and give them to a Neurosurgeon and start the process of trying to get surgery scheduled. It’s kind of had to envision this at the moment because we haven’t spoken to anyone yet who’s said ‘fuck yeah let’s get that piece of shit of out you’. Our primary focus up to now had been getting my heart taken care of so now we can start focussing on this.
3- We do nothing, and just go back for another scan in five or six months. This is my least favorite option but it was given to us nonetheless. We don’t know if, or how fast this thing is growing inside me, so I don’t want to potentially miss a window of opportunity to get it out. So no.3 is an option but it’s not one I’m considering.
So thats that and it brings me to the end/beginning of another week.
Lots of people have been telling me that they appreciate me doing these updates so they will continue. Me keeping a journal of what’s going on is also very helpful for myself to work through the mental side of all of this.
We arrived in Boise so I could get my Covid test. They did the swab up the nose thing. I had heard a bunch of horror stories about this but honestly it wasn’t bad at all. Maybe they’ve changed how they do it or something?
Surgery – short lived victory
Spoke to pachek – gave us the run down and options – I detailed this above
Spoke to a lady from some cancer research dept at the local hospital – they want to speak to me next week and do some genetic testing but it’s by phone so it’s probably not very accurate.
Meeting for Monday scheduled with Neurosurgeon and the NIH told us we would receive a date for the scan shortly but it ill most likely be mid September.
We spoke to Dr Boockvar in NYC this am. He was very confident that he can remove the tumor, that I could return to normal life, and enjoy all the things I love.
He said he would want to wait 90days after my procedure last week and that after the surgery my recovery would be about another 90 days after that.
This is very encouraging news for us. Seeing as this just happened a few hours ago I haven’t fully digested the info yet. At the moment we are still planning on going to DC for that scan, and are still planning on speaking to as many surgeons as possible before we make a decision but for the first time in a while I feel a little bit of relief 🙂
I can’t believe it’s only been three weeks, it feels like much longer. Overall I’m doing well. The majority of my days are spent chatting with people and keeping them in the loop with whats going on. I’ve been going to yoga most days but I’m being extremely cautious. Holding myself back is very difficult, but I’m getting better at it.
July28 – Back for a follow up with my Neurologist. No new information really. He was just making sure I hadn’t collapsed again since the last time I saw him. He ordered a Thrombotic risk panel for me which is basically a blood test to see if I am prone to clots. That would dictate if I needed to be on a stronger blood thinner prior to surgery. They took 10 little vials of blood for this test!
29 – Hospital called me to schedule my Covid test Mon 3rd and to give me some basic info on the surgery. In short, I will check in at 6:30am, Procedure will be at 8am, I should be out and in recovery by noon, and will potentially be allowed to go home. Normally they keep you overnight but because of Covid they don’t want anyone staying that isn’t absolutely necessary.
The actual surgery seems fairly straight forward. They make a couple small incisions in my groin, go in through my femoral artery with a catheter, head on up to my heart, fix the hole, and bobs your uncle.
30– Told by the NIH that they will not do surgery to remove the tumor in my neck. This news was devastating. They said because of it’s location that the chances of me having permanent nerve damage and ‘deficits’ would be extremely high. Deficit is now one of my least favorite words. Things like loss of facial muscle control, speech, drooping etc – basically all horrible stuff.
They recommended I either get radiation treatment, or, find a Neurosurgeon who will do the surgery.
I’m very torn on this decision. If I opt for the radiation it will initially consist of six weeks of treatment five days a week. This will be in an attempt to stop the tumor from growing and or potentially shrink it. Then I’ll have to go back for scans every five months or so for the rest of my life.
I don’t know if I want to take the risk and have the surgery, or be a lab rat for the rest of my life. It’s a tough decision and at the moment I have too many questions that need to be answered first.
August 1– Spoke to a cancer research doctor who is going to put in a bunch of calls to try and find a Neurosurgeon. We are also waiting to hear back people at the Mayo Clinic, John Hopkins, and The Huntsman Clinic.
3– And that brings me to today. We headed to Boise soon. It’s so strange, I have my heart procedure tomorrow and I’m really not concerned about it. I’m almost viewing it as a box I need to check so I can start dealing with the real issue.
In terms of how I’m doing physically I feel amazing. I feel strong, healthy, and sharp. In a way I think this would all be easier to deal with if I was sick in bed because at the moment I don’t feel like there is anything wrong with me. I know I will recover fast.
I can’t believe it’s only been a week since my previous post. So much seems to be developing every 7 days that it seems much longer.
21 – I went for my Echocardiogram to determine if I had a hole in my heart. This was my first time seeing one of these ultrasound machines and circumstances aside they are really cool. One thing about getting all the tests I’ve had over the past couple weeks is my level of appreciation for the people who invented technologies like that. It’s pretty incredible they can put a sensor on your chest and actually watch your heart beat on a screen.
Anyways, they ran the echo, and then did a thing called a bubble test where they shoot a couple bubbles through your blood stream and see if they get released though the hole they are looking for. The Sonograher (I’m learning so many words) openly told me she saw what was going on but couldn’t tell me cause she could lose her job. I didn’t protest. I understood.
22 – Went to a local clinic to get a full blood work up.
We received a phone call in the afternoon confirming I do have a hole. The type is called PFO (patent foramen ovale). It was explained to me thats it’s more of a flap like opening that didn’t close at birth vs an actual hole but calling it a hole is the easiest way to explain it.
“Patent foramen ovale occurs in about 25 percent of the normal population, but most people with the condition never know they have it. A patent foramen ovale is often discovered during tests for other problems. Learning that you have a patent foramen ovale is understandably concerning, but most people never need treatment for this disorder.”
So it’s highly likely that I’ve had this since birth and haven’t had any issues BUT some of the less common issues that arise as a result are unexpected stokes (bingo) and migraines – which I’ve suffered from since I was a young kid. The general consensus now is that the stroke was caused by a blot clot that either originated in my legs and went up into my heart, through the hole, and into my brain, OR originated in my heart and went up from there. I guess the specifics on that don’t really matter.
And to top that off I also have an aneurysm – “ASA – An atrial septal aneurysm is a rare but well recognized and localized saccular deformity of the atrial septum that bulges into the right or left atrium with uncertain clinical significance. Diagnosis can be established using transthoracic (TTE) and transesophageal echocardiography. Although these abnormalities are considered clinically benign entities, they have been independently associated with ischemic stroke.”
23– Spoke to a cardiologist in Boise and got my name in for potential surgery on August 4th fix the PFO – Fuck Yes! Now onto the tumor .
24– Spoke to a really nice lady from the NIH (National Institute of Health) in Washington. One of the first things she asked me (before I even spoke) was where I was from originally from. Apparently she had watched a few of my youtube videos (the ones I talk in) which was kinda funny/flattering. One thing she explained was that we don’t know for sure that the tumor I have is actually a Paraganglioma. Apparently they can frequently be mis diagnosed. Because of the location it’s in it cannot be biopsied, and we won’t know for sure until they ‘get in there’ – So in one sense it’s nice to know that people could be wrong, but it also just creates more questions. I’m doing my best to stay relaxed about all this. It’s good to get several opinions on everything but it’s also quite confusing, and stressful.
So she had a lengthy chat with us about my case. We sent her all my test results (CT, MRI, CTA, Echo, and Bloods) and she told us they were going to present my case to the surgeons next Thursday (July 30th) who would then determine if they will take me in or not. A little bit of uncertainty but I’m at least ‘medically interesting‘ enough for them to at least hear my case. The ball is rolling and things seem to be getting figured out. If I am denied (for lack of a better term) by them, Sequoia has a plan B, C, and D, ready to go.
25- Spoke to a hot shot, smartie pants, cancer research doctor who was recommended to us by a friend of mine. Thanks Mills (my millie). This was the first time the word Cancer had been mentioned to me by anyone so I was little freaked at first but I guess I have to explore all possibilities, and be ready for every outcome. Unfortunately that question will not be answered for a while yet, but I’m not going to allow my mind to wander too much about it.
After another lengthy chat, he told us something to the effect of “Everything that you guys have done so far is exactly what you’re supposed to do. The people you have talked to, the research you’ve done, and the speed at which you’ve been able to accomplish all of it is remarkable.”
He said that everything we’ve done so far is what he usually recommends people go and do, so seeing as we’ve done it, he just asked us if we had any questions, and if he could be of any help to us.
Hearing those words was extremely comforting knowing that we are on the right track.
One massive thing that cannot go understated here – I keep using the word ‘we’ but honestly Sequoia has done EVERYTHING. Her full time Job for the last 18 days has pretty much been researching everything thats been going on and making it happen as quickly as possible. If someone tells her we have to wait 5 days for the results of a particular test, she picks up her phone and immediately starts trying to find somewhere that can do it in 2. Thats the kind of person that she is and I could not have imagined someone better to have by my side during all of this.
“ok so we are going to go in and up through your groin, insert this gore into your heart, and fix the hole. Then we need to cut open your neck, and remove the tumor”
Look me in the eyes and say the above and I won’t even blink. But hand me $20 and say “I know things are hard right now man, your next meal is on me”and I will blubber like a baby.
Obviously I have some deep issues with self worth and being vulnerable. I am working through that. I am doing my best to be grateful and just say thank you but the hardest part about all of this has been allowing people to help me. All I can think about is how to repay them. One of my old clients said something to the effect of “Right now you need to focus on getting better, staying healthy, and when this is all over you can figure out how to pay it forward” – Those words have been at the forefront of my mind since. I keep thinking ‘I don’t deserve this’ and try to almost ignore it, but thats my old pattern repeating itself so I’m at the point now of acknowledgement, and reluctantly accepting, but I’m making progress.
Most people think I am a strong, confident, fit individual but I am just as broken on the inside as those who choose to share their feelings openly. I have always just bottled it up. I used to judge the fuck out of people who would pour their hearts out on the internet and now here I am. I define the word hypocrite.
The world is a mirror, and the things that you judge in others are often the parts of yourself that you have disowned. I’ve known that concept for a long time but I’ve also silently projected my own insecurities onto others for an equally long time. I never actually did the work on myself in this area.
Even though this journey has only really started I am already truly grateful to have learned the things I have about myself thus far. I could do without the severity of the situation, and I would love for it to be over but I will remain present, and accept what the universe has in store for me.
Stoked for another week of bad news, more realizations, and trying to be as healthy as I possibly can as I continue to navigate my way through this shit storm.
On a more beautiful side note, I met Sequoia one year ago today. Below is the post I just put up on Facebook 🙂
In an effort to help me deal with recent events I’ve decided to document this journey I’ve been forced to go on.
I guess I’ll start with the post I put up on facebook this morning.
Now to give a little timeline of events
8th – I was working an Object Avoidance course and had come back to the school to begin debriefing my students. It was around noon. I lay down on the couch to rest for a few minutes. We had started at 5am that morning and I was a little tired.
When I sat up the room started spinning in a way I’d never experienced before. Everything would rotate about 90 degrees then skip back and just repeat. This went on for several minutes before I went to the bathroom thinking I needed to throw up. I dry heaved for a few mins and nothing changed. I knew something was wrong. I made it back to my phone and called my wife Sequoia. I told her I thought I had a migraine and she had to come get me. I tried to walk to the car and my legs buckled underneath me. My legs wouldn’t work. I could move them but I couldn’t place them where I wanted them to go. I collapsed and tried to crawl and experienced the same thing with my arms. We went home for a couple hours then my boss’s wife Cheri who’s a doctor came to check me out. She recommended I go to the hospital. I went, they did a bunch of tests on me, one of them being a CT scan, which came back clear, and I went home.
9-13th – I only got out of bed to use to bathroom and even that was a struggle. I couldn’t stand up without everything spinning and I would throw up immediately afterwards. Cheri recommended I get an MRI.
14th – Went to SLC to get an MRI and it was confirmed that I had suffered quite a large stroke.
15th – Went to Boise to get a CTA . That evening Cheri received a call informing her they had discovered a large tumor in my neck. It’s called a Paraganglioma which is apparently extremely rare and only effects two in a million people.
17th – I met with a Neurologist who read all my scans and gave me some kind of road map. He told me that the stroke and the tumor were unrelated, and that the stroke may have actually saved my life. If it didn’t happen the tumor would have remained undetected, continued to grow, and potentially would have just choked me off in a few years. He then proceeded to tell me he thinks the stroke may have been caused by a hole in my heart and that I would need to get an Echocardiogram to confirm.
So thats where I’m at now. Kind of lot to deal with over the space of 10 days. My Echo is scheduled for this coming Monday so fingers crossed we get a little more solid answers.
Sequoia has been going 100mph (as she always does) researching the kind of surgeries I need, and who the best people are to perform them.
Overall I’m doing ok. I am confident that I will make it through this fire and be a much stronger person as a result. Our characters become defined by how we react to situations which seem insurmountable and this is one of those.
Someday this will all be behind me and it will be a good story to tell. I will not curl up in a corner and feel sorry for myself. I will not play the victim. I will face this head on and I will make it through.
I’m going to update this with a new post every Monday. Please keep me in your thoughts.