Braino

Date: Sun, 31 Aug 2008
Subject: Another very long e-mail from Braino

Hi, everybody! I've updated my "brain" list, so some of you are probably receiving this e-mail directly from me for the first time. I've been trying to send my own e-mails because, first of all, I love hearing from everyone and selfishly enjoy knowing you are thinking about me and praying for me. And, equally, I think it is nice for you to hear that I'm really doing okay and am still *mostly* myself. I say *mostly* because I still have got some weird things racing around my head. For example: I am largely convinced that my hair and I actually are separate beings living our own separate lives. Really. Or, I'll see a label or tag on something and in all seriousness ask myself whether I am required to care about it. Just very strange, slightly irrational, and mostly entertaining thoughts.

Good news includes that I am home from the hospital as of Friday afternoon- yay! Imagine that—three days after major brain surgery! I am sleeping well, walking around, and enjoying my most fabulous new scar. Mark helped me wash my hair (that which remains), and, in fact, classified himself as "very good at it," and so I am even clean and fresh smelling. Life is good. My pain is down significantly from last week, though I still have a substantial lack of hearing in my left ear. This may or may not come back, but it is awfully early to even think about it. There was quite a bit of "mucking around" (as the neurology team put it) in not only the ear, but the skull, brain, and everything else on the left side of my head. Marsha Dyer jinxed me by mentioning how she was surprised by my not having a black eye, and I now have a puffy yellow left eye. Thanks a lot, Marsha ;)

Other fantastic news is that Lloyd appears to have been removed at a 70% or possibly better rate. He was "margarine", not "jelly" (unfortunately), but Dr. Lim was still very pleased with the amount he was able to remove. Two days after surgery another MRI was done, and it appears that even more was removed that thought at the conclusion of the surgery. Dr. Lim told Mark on Thursday night that "whisps" remained, and the pathology results over the next few weeks will tell us how to proceed on their removal.

Pathology will take about two weeks, and I will probably get my staples out (I've counted 35) at about the same time. We have NO idea what Lloyd is right now—he could be benign or malignant. The important thing is that we have gotten so much of him out already and that we should be able to get a diagnosis. Also, he has been "good behaving," and very nicely decided to stay further away from my speech region than we were all afraid of, which allowed us to get so much of him out already.

The last good news I'll mention in this very long email is that I get to taper off of the hideous steroids I've been on since July 21. Those of you who have seen my messages have heard me complain- a lot- about the side effects of my steroids—emotional outbursts, wanting to kill people, acne, weight gain... what a mess I've been! It was being used to control my brain inflammation- I did have a lot of "extra" tumor in there puffing up my brain and causing weird things to happen (loss of reading, language functions, etc). But Decadron is also used to stimulate appetite in cancer patients and makes blood sugar go up to the point that I was given insulin while hospitalized. The result of which is that I have barely been able to stop eating for the last 6 weeks. Last week I had a package of PopTarts for breakfast (cherry frosted PopTarts are the nectar of the Gods), and at the conclusion of eating said PopTarts, I asked Mark to guess how many additional PopTarts I thought I would like to eat right then. The answer was 8. I did limit myself (unhappily) to 2, but you can see what life has been like for 6 weeks. Ugh. However- those days are nearly over, and by next week I will be ALL DONE with my "Deca-drama," as I named it. All of my prescription drugs have come with special *extra* labels which urge me to remember that my doctor has decided that the benefits of the drugs outweigh the possible side effects. LOL. Oh- speaking of which- my full-body rash from the first seizure medication is also gone- truly, things are GOOD!!!

I will wrap up this very long note by thanking you all again for your wonderful concern for me. I cannot ever express how much it has meant to me—to us—to have so much affection and support from all of you. We have felt so loved and cared for, and have never felt alone. No one chooses something like this, but things are working out as well for me as they possibly could, and I am okay. We both are. I realize it sounds strange, but so much good has come from this that it is hard to see it as "bad." I am confident that we are on the exact right path, with the exact team we belong with, and that this will have a happy conclusion. It has seemed lengthy, and it may yet be a haul, but I feel like our progress is tremendous and will continue to be so. I also think that every bit of good will, caring, prayer, and encouragement we've gotten from you has propelled me to where I am. I can never thank you enough- please know how very much it means to us.

Love, -Kristina (and Mark)

P.S. I am attaching the photos of my scar again- just because I think it is so awesome and want everyone to have a chance to see it if they like. I also reiterate that I think brain surgery is fascinating, and if you want to ask me anything about it, please feel free—I don't mind at all!