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 🙂