Mayo Clinic Appointment

Well, the appointment with my Mayo neurologist went exactly as I thought it would. The Mayo doctors and the UW doctors don't completely agree on treatment plans. The Mayo doctors and UW doctors do agree on me having had the ETV surgery on Tuesday,  at least. That, plus the Decadron steroids (the most evil drug on the planet), that I'm taking are buying us time to make an informed and well-thought treatment plan decision.

Thalamus tumors are a highly-debated topic in the medical community. They don't know enough to say, "this is how we treat this type of tumor, most effectively and safely, every time."

We did get a lot of questions answered, so that part was good. We're left with a very important decision to make - surgery then chemo or just chemo.  The UW doctors are confident that they can remove enough of the tumor to be worth the surgery risk. The Mayo doctors don't think that enough of the tumor could be removed for it to be worth the surgery risk since it's such a deep brain tumor. To further complicate matters, Mayo is usually the one that says surgery can be done when other hospitals contend that it cannot.

Either way I will be doing chemo (same kind I did last time - Temodar - plus another if needed). The good news is that we have many pharmaceutical treatment options that have proven success. We do still have radiation as a back-up option, since it has been 6 years since my last treatment.

We're going to meet with a UW neurology oncologist early next week for another treatment opinion before we make a decision.

Thank you to everyone for the prayers and healing wishes. N. and I and our families really appreciate the support.

Round 2 - Here We Go!

Well, the bitch tumor is back, and she brought friends.

Last Friday morning, I woke up with what I thought I was a sinus infection, which is not uncommon for me. By Saturday afternoon though, I was starting to get a lot of nausea and dizziness. [Happy first anniversary weekend...]

The last time I had that combination of symptoms was after I finished brain tumor treatment and went back to Steamboat, and my brain swelled while the tumor was breaking down. 

[Cue K. suspicion]

To top it off, each time before I'd get dizzy/nauseated, I'd have something like a "scent memory" - I'd smell a certain unknown smell and have images flash through my brain, none of which I could place. 

[Cue suspicion #2]

I was a complete space case at work on Monday and felt like I was in an alternate reality. That's when I decided to drive home, get N., and go to the ER at 11:00 am. After finally seeing the ER doctor at 3:00 pm, he sent an order for me to get an MRI (since I have brain tumor history - I was going to demand one anyway). It was 6:00 pm before we saw the doctor for the second time to hear the results from my MRI. 

Words can't really describe the shock we felt about getting this kind of news for the second time. I was admitted to UW hospital Monday night. 

The tumor is in my right thalamus again, but this time it's partially blocking the path between my third and fourth ventricles in my brain. I had ETV surgery on Tuesday afternoon to relieve the pressure in my brain from the cerebrospinal fluid not draining and reabsorbing properly. Surgery was successful, and I was discharged from the neuroICU Wednesday evening.

We are headed to the Mayo Clinic tomorrow morning to meet with my doctors from the first time to talk about treatment options.