Unexpected - follow up with Dr. Van

So it's taken me a while to write this post since yesterday.  It was a very log appointment. I had lots of questions and there was a lot to talk about.  Let me see if I can sum it up as best as possible.

I am at a neurological low point right now (if you don't consider the point where I actually had a stroke which I don't remember, but I'm told really sucked). I have spent so much time having poison pumped into my body, and I have so many other things wrong with me in the first place (inner ear problems that complicate the issue), that I am at like a level 0 right now. It is to be expected that I would have trouble walking and keeping my balance and concentrating and getting really dizzy.

A big question was what is the cancer vs. the stroke vs. me.  Do I just need to give myself more time to rest and rehab, or can I expect some of this to just be a change to my life?  I still struggle to walk - I have even fallen.  I have trouble concentrating.  I have vision issues.   The consensus is that I need to rest a bit more and rehab and see an ENT and/or neurologist moving forward to work out some of the issues that I have going on that are keeping me so miserable.  It could be a lot things, and I could need yet ANOTHER brain MRI and a spinal tap to get to the bottom of things. Dr. Van actually used the words "leukemia in the brain" which made us all a bit uncomfortable.  It's very unlikely, but can only be ruled out by a neurologist with these tests.

Basically - now that we have attacked the cancer I will need to rest a bit and then start attacking the other things I need to attack.  I need to go back to see Dr. Jalkut to do my 5 year anniversary for my Renal Cell Carcinoma. Yeah - that other cancer I worry about re-occurring  Yes - if you have to ask - I am in denial about that - shut up..  That should be fun.  I need to go to an ENT or neurologist and deal with this god-awful dizziness and vertigo and weakness. I need to get stronger.  I am so weak people. I am still walking with a cane.  I have fallen.  I can't concentrate for very long and you can see it on me. It's like literally watching me physically deteriorate.  And I can't deal with it. So I need to get stronger.  This whole thing has weakened more than I care to admit.

We talked about the heart problems I faced.  They are directly related to the arsenic chemo I was on.  I am off the arsenic.  My heart is better and I should not have to worry about that any more.  He allowed me to go off the magnesium and potassium pills that I was on (thank you Lord!  Those suckers were huge!), and go back on Cymbalta (Daren is so happy!). My sinus rhythm is back to normal and I no longer have the prolonged QT.  This was directly related to the arsenic that they were pumping in my body.

And then there is maintenance.  We discussed maintenance - what it is - what the schedule is- when it starts.  I go back in 2 weeks and start maintenance.  It consists of 3 drugs that are all oral and will have 8 cycles that will make up 2 years and are monitored via blood work.  We talked about re-occurrence - if it would happen, how it would happen, and how it would look. I am considered to be in molecular remission. Maintenance will be long, but will be very do-able. I will not have the side effects I did before.  I can do it from home. It is chemo, but not like before. I should be able to proceed with life.

So.  Rest. You have to know I am not taking that news to well. The littlest thing makes me tired and that is the way it's supposed to be right now.  And I have some doctor's appointments to make. Whatever. I'm alive.