Subject: Short novel all about Kristina's brain
Hi, everybody. Here is a very long-winded e-mail about what is going on with my brain. Lloyd the tumor has announced himself in spectacular fashion and disrupted my life to a gigantic degree, but we are dealing with him and making progress on what steps to take to get rid of him :) I was writing this very long e-mail to one friend, and then I selfishly decided I'd copy it and send it to everybody, then I'd know I had everyone on the same page. Please forgive the length—apparently I'm in a talkative mood this morning. But you can't complain or hold it against me because I have a BRAIN TUMOR and am entitled to ANYTHING I WANT. lol.
The e-mail to my boss that I mention, about the functional MRI, I've pasted on at the end.
Thank you all so much for thinking about me and keeping me in your prayers. It is hugely comforting to know that people are rooting for me—I want to kick this thing and get it behind me. Won't I have a great story?
Love, -Kristina
The letter:
Sorry—things get hectic and I forget who I've kept posted. I'm a lot better. I'm doing stuff around the house, we go shopping (a lot, it seems. Not sure Mark was familiar with the intricacies of buying toilet paper and shampoo before all this ;), going to the movies, out to eat, etc. It is handy that the Olympics are on right now—we're getting to see a lot of them. Basically, aside from being foggy and having my head sort of ache all the time (and these stupid ribs STILL haven't totally healed), I'm okay. I don't quite feel like myself—I'm not interested in much, get tired easily, get confused, forget things, etc. That is the story on how I actually feel.
The steroid I am on to reduce the swelling in my brain (Decadron) is used as an appetite stimulant in cancer patients. It also causes violent mood swings, rage, fluid retention, and acne—among other pleasant things. So I at least know why I can't stop eating. I've put on some weight which is driving me crazy. I know it is the last thing I should be worried about, but it is hard to ignore a double chin. The mood swings and rage are much better now. There were a couple of people last week that were lucky I didn't launch myself at them (the records center lady at Mercy, specifically, should be thanking her lucky stars). I do cry very easily, which is not like me at all, but then, this is a pretty crap situation. The anti-epileptic (seizure) drug, Dilantin, is what was partially making me so out of it in the beginning, but I appear to be getting used to it now. The doctor mentioned that the other day. He said it takes a few days to come up from the fog of the Dilantin.
Now—brain. Mark's good friend from high school, Kelly Parsons, helped us get into the super-awesome neurology department at Johns Hopkins (consistently ranked as the number one hospital in the United States), which is how I got where I am. VERY lucky. All of which is to say that I know that I've got the absolute best team working on me, and I don't have to second guess any of their decisions. I already know I will do whatever they tell me, because I know they are the best. Which is a great comfort.
Dr. Lim is my neurosurgeon, and he only sees patients on Thursdays. He is very nice, and actually calls us personally. He met with us and studied the work-ups that Mercy (the hospital the ambulance took me to) did, then presented me to the Johns Hopkins Peer Review Tumor Board. He called that Monday, after meeting with them, to tell us that the board thought we should do a functional MRI and that they were also "leaning toward doing a biopsy as well." The functional MRI maps my brain function in the left temporal lobe (where my lesion/tumor is) and lets the surgeon make a more educated decision about surgery risks. That region is responsible for language, speech, and—to a degree that is difficult to measure—memory. Not motor functions. I'll forward you an e-mail I sent to my boss about the test— he is very curious about the whole thing, and you might like to hear about what sort of things I had to do.
So- that was actually how I spent my birthday. Having a functional MRI at Johns Hopkins. lol. When it was done, though, we went to Sephora (my favorite) for a birthday spree :) If you read the email to my boss, you will see that the neuro-radiologist who administered the test is "the guy" in the field, heading the board of standard-setting for the test. Again, so comforting to know I'm in the best hands.
Dr. Lim called last night to tell us that the test was being interpreted, it takes about a week— it is very complex— and that he will see us next week to discuss it. He understands that this waiting is killer, but he had told us the week before that the board thought that the functional MRI was worth doing before proceeding with anything else. The doctors yesterday referred to Lloyd (as Sansi named my mass) as a "left temporal lobe lesion" and a "tumor" interchangeably. So, I'm now calling it a tumor, for brevity as much as anything.
I am determined not to read about any of this on the Internet—I do not want to freak myself out. Dr. Lim believes that I've had this for months or years, and it just finally has announced itself. We don't know what it is, and we won't for a while. It could be a totally benign tumor that could be surgically removed. It could be a benign tumor that gets to stay because it is too risky to remove. It could be malignant, and there are a multitude of options for treatment. We just don't know, and I am trying my hardest to stay calm. Nights are bad, and Mark and I have had more than our fair share of crying. But we just keep telling ourselves that there is no use in borrowing trouble, and we try to stay chill. After all—whatever it is, it is already here. We can't wish it away. It is in there, and we are just going to have to deal with it. This IS the new normal for us, so we're working to adjust.
On the plus side, if you're going to get sick, you might as well do it in a giant and scary fashion—people are so terrified that they just fall over backwards to want to try to help you. Which is not as mean-spirited as it sounds-- for example, Mark's work has given him permission to work from home indefinitely. Not too shabby, and probably wouldn't have happened for a less scary-sounding affliction. And they are sending someone over on Friday with frozen foods they've made for us- SO sweet. At my work, people from all over the country are calling in daily to my boss to inquire about me, sending me cards and e-mails, putting me on prayer lists, and just generally pulling for me. I've been sending in little update e-mails to the staff as I have things to report, and they have really liked that—I mean, brain surgery IS interesting. They took up a collection and gave me a $200 gift card to Sephora, and there is a mystery second gift that is to arrive on Saturday. "Brain tumor" just really hits a nerve, and rightly so. Not a day (except Sunday) has gone by- literally- that a card, floral arrangement, or other treat has not showed up here. My boss has been to visit every week, and calls almost every day. If it weren't for this, I would be at BWI airport right at this minute on my way to Geneva and Berlin with him for two weeks. I am SO LUCKY to have had this seizure when I did—two weeks earlier and I would have been in a hotel room in Dallas for 9 days alone, three weeks later and I would have been in a hotel room in Geneva or Berlin for 12 days alone. Scary.
So, that is the news. Another week of cooling my heels, and realistically even longer than that before we even know what we are dealing with- I don't think we can know what it is until the biopsy. (Dr. Lim mentioned to Mark that the biopsy will be of several portions of the tumor-presuming we do the biopsy, which I think is a certainty-so I'm wondering if I'll get to keep my hair. Poor Mark- I told him he's going to end up married to a 200 pound hairless moron! ) The waiting is hard. But, Kelly- that is, Dr. Parsons- had Mark read him the initial MRI's, and he says that two things we have in our favor are that it is "non-enhanced" and "low grade". He also says that he hears our surgeon is "excellent" and that he would not be concerned about the delay. I'm not looking up these terms, I'm just taking his word for it-- they mean the risk of cancer is lower. Plus, my lumbar fluid had no malignant cells. And, even if it is cancer, it is not an automatic death sentence. People survive cancer all the time. And I am young, healthy, and have the best medical team for this condition possible. What are the odds I'd be in Baltimore when this happened? Seriously- I realize I'm a person with a brain tumor saying this, but I am such a lucky girl. In so many ways- I'm just lucky.
Love, -Kristina
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