Third: More questions

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.

July 28 – 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.

From Facebook: