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.
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 🙂