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.
My mind is clear
My body is strong
My spirit is sharp
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.
Thank you for reading.
So as if I didn’t have enough going on right now my website was hacked. While the support peeps were attempting to back up and restore everything all my content was erased. 11 years of memories gone.
After three phone calls to my hosting provider trying to sort it out I just told the guy to set me up with a new one and I would start over. At the end of the call he said ‘Mr McEvoy, I really admire admire your patience. You’ve been so calm about all this. Thank you for being so understanding’ – I told him that I’m getting used to bad news and while losing 11 years of content is unfortunate, I have much bigger problems to deal with at the moment.
Anyways, this is my new site, fresh, and clean. I will probably start building it out gradually and dig back to see if I can locate any of my old content but right now this is it.