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.
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.