yes, my last blog post was in simpler times when I could just be happy about a fancy new hair cut...oh how things have changed.
Last November I had an "incident" in which I woke up one morning, ran up the stairs to the bathroom and then...keeled over. I had a high fever and who knows what, and ended up in the hospital for 8 days with pneumonia.
During my time in the hospital, the nice doctors and nurses decided to put the time to good use and do 100 billion tests on my bad self. I swear, I'm pretty sure I had 8 CAT scans in one day.
So with words such as "cancer", "MS" and of course the lovely lupus being bandied about, I was having a ball! Still not sure what the whole passing out on the floor was about, but probably the 104 fever didn't help.
Fast forward to the present. It has been rough times since the hospital stay...my head is fuzzy most of the time, I have blurry vision in my right eye, pain comes and goes. I am on some nasty drugs (Cytoxan, a chemo drug), which make me feel better but destroys my immune system and makes it hard to eat.
One of the fancy things they noticed during hospital testing mania was an unidentified spot on my brain. I did go see a (crazy) neurologist back then, but he pretty much blew it off as a side effect of the lupus and thought it was vasculitis, so we decided to wait and see.
Then I went to see a neurosurgeon. He said he didn't think it was a tumor, he thought it could be MS and I should see a specialist to rule it out. So off the the MS center at St. Barnabas. After more tests (an MRI and and MRI spectroscopy), MS neurologist said it (most likely) wasn't MS and that is was a tumor and I should see a neurosurgeon (see where I'm going with this? yep, that's a complete circle baby!).
Anyway, that brings us to this morning. Somehow I was able to get an appt. with head of neurosurgery at St. Barnabas the day after I called (on his day off). These circumstances made me a bit nervous, but I was grateful he could see me so quickly.
Mom accompanied me to the appt (thanks mom!) and we learned the good news and the bad.
The bad: It's most likely a tumor. There were indications on the MRI and the MRI spectroscopy that both point to tumor = yes. Not conclusive but pretty likely.
The good: At this point it's small and it hasn't grown since last Nov. Also, it is located in the front left lobe and it has been determined by very smart people that this part of the brain doesn't do anything (huh?).
The other bad: Recommendation -- Brain Surgery.
The doctor says that the spot should be biopsied and while they're in there, they might as well just cut the whole darn thing out. I am still wondering what happened to the good old days of "wait and see", but there are risks associated with that (the tumor could grow and spread into places that it actually would cause problems, or could grow large enough that chemo and/or radiation would be necessary if they did surgery later - the tumor is small enough now that chemo/radiation would most likely not be necessary).
Of course having lupus will make any surgery that much more complicated, still not sure the details on that one.
So, lupus, I'm sorry but you're going to have to take the back burner for a while. Yes, I know that you have been totally a pain in my ass (sometimes literally) for the past 3 years, but unfortunately I have other things to think about for the time being.
I guess that's all I can say at this point. I keep trying to figure out a reasonable status to post of Facebook, but just can't come up with something that works, so will skip it for now...hi I'm kristin and I have a brain tumor seems a bit harsh...
I'm sure this hasn't sunk it yet, I keep looking around for Candid Camera to pop out of the closet. But what the heck, if I panic it's not going to help anything.
I'm glad I found a decent doctor and that he's fairly close by. He was very clear with his thoughts and he answered all of our questions.
Alright, that's enough babbling for today. I'll keep you posted...
1 comment:
Love ya K.
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