Bored & Reevaluating

Monday, October 13, 2008
Subject: Lloyd in Autumn...

Hi, everybody. I haven't written because there hasn't been much to report, but since "check-in" emails are arriving I thought I'd send an update. Here is the main item: I'm bored. This, oddly enough, is great news. When I first had the seizure I simply sat around for weeks not interested in ANYTHING. I didn't watch TV, I didn't read, I didn't talk much. I just sat. Of course this was due to the brain swelling and the drugs, but it was so unlike me. So—if I'm healing enough & have booted enough drugs from my system that I'm actually bored, I take this as a great sign. I'm looking forward to getting back to work & having something to do other than organizing and re-organizing my house.

I have had the same box of Pop-Tarts in my pantry for weeks, as I only rarely have one now. In fact, I read about the role of nutrition in fighting cancer, and guess what? Pop-Tarts apparently are no help at all. Lol. They seem to think that leafy greens are better. Imagine that. So—we have now purchased a juicer and are having surprisingly delicious juiced vegetables and fruit for breakfast. A vegan diet is supposedly the ideal, and while we aren't planning to completely go that route, we have been surprised at how tasty and easy a lot of the recipes can be.

I've been walking to regain my energy and make a dent into the 20 pounds I acquired through this ordeal. It has been so beautiful here in Baltimore, the leaves are just starting to change, and we enjoy getting outside as much as we can. I still take a nap most afternoons, but I can feel my stamina coming back slowly.

We go to the surgeon next week for the 2-month post-op check-up, at which I expect to be given permission to go back to work. The following week we go in for the 2-month MRI, which is when we'll start seeing how Lloyd really behaves. The next six months of post-surgery MRI's are going to give us a much better picture of his behavior. Everything so far points to a slow-growing Grade 2, but we won't know that until we observe him for some time. If he is, indeed, very slow growing, we won't need to do anything for some time. If he is more aggressive, we'll have to decide what treatment to proceed with. Mark has been doing lots of research and contacting various programs for additional opinions, so we are staying abreast of as many options as possible.

Thank you all for your continued care and support—I'm still receiving cards, goodies, and messages every day. It really helps us feel connected to you all and the world in general—thank you for thinking of us. I think that a person can't help but reevaluate their life and how they spend it when something like this comes along, and I am happy to have discovered that I wouldn't change anything. I have a great life—no matter how much of it I get to have—and you are all a big part of that. Thank you.

Love,

-Kristina (& Mark)

Adjusting

Monday, September 22, 2008
Subject: The future of Lloyd

Hello, everybody! Having had my (very successful) surgery, I will primarily see a neuro-oncologist for the further treatment of Lloyd. I am now officially a patient at the Kimmel Cancer Center at Johns Hopkins, and having met with Dr. Grossman we now understand more about Lloyd and how to proceed with him. Lloyd, unfortunately, is here for good. He is not curable. It is impossible (Dr. Grossman's words) to remove 100% of these kinds of tumors. In fact, as I've mentioned before, I am extremely lucky that my tumor was operable at all. Many astrocytomas are not.

Lloyd is a tumor which is a slow-growing cancer. We have no way of knowing for certain yet what speed he is growing at, though everything so far tells us that he is slow-growing. We discussed my treatment options with the Dr. Grossman—this kind of tumor has three: chemo, radiation, and close observation. In my case, chemo does not make sense. My cancer cells aren't developing fast enough that the chemo would disrupt them the way it is supposed to. Radiation would slow the growth of my tumor, but it would also keep us from being able to learn how fast it grows on its own. Also, research has shown pretty conclusively that patients who choose radiation have the same survival rate as those who choose close observation.

So, close observation it is. I'll have an MRI every 2 months and we will see how fast Lloyd is growing and we will choose what to do next when he gets big enough. At the moment, I've had about 95% of the tumor removed, so hopefully it will take a while. We were told that it is extremely unlikely with this disease that multiple tumors develop—Lloyd should be the only tumor I will have to worry about, and he chose to grow in a part of my brain that is operable. My hope is that every time he gets big enough to cause worry we can perform surgery again. Incidentally—another piece of good news is that this kind of cancer does not spread into any other areas of the body.

The hardest part about this diagnosis is the incredible uncertainty that we have to learn to live with for the rest of my life. Although my situation, compared to most people who develop brain tumors, is pretty good, it is still hard to adjust to the fact that I have incurable brain cancer. Also, these tumors change. It seems like the usual path is that if they start as a level 2, at some point they change into the worse kinds. Now, this could be years from now, or it could be at any time. Every 2-month MRI could bring bad news. Chances are that mine is going to give me a decade or two (or more!) before it gives me additional trouble, but the fact is that it could change at any time with no warning. And that is a difficult way to learn to live. But we will, and we will make the most of whatever time we have—be it the 15+ years I believe I can expect, or be it some lesser amount.

In the meantime, I am feeling better and better, and my house is cleaner and more organized that I had ever imagined it could be. Apparently I remain a "high seizure risk," so Mark is still staying home with me. The longer I go without having another seizure the more my risk drops. Maryland’s law (some say far too lenient) is that you must wait 3 months after having a seizure before you can go through the process of reinstating your license. This also involves the approval of a state medical board, so who really knows when I may be able to drive again. I don't think Mark had any idea how often the magic fairy that stocks our house with food and supplies had to travel to Wal-Mart and the grocery store.

I am to heal from my brain surgery for a full two months, and I will see Dr. Lim at the end of that time for a check-up (late October). Interestingly, I can't feel my scalp above the top line of the incision—it is completely numb almost to the top of my head. My scar is not NEARLY as cool without the staples and my hair is growing in and covering it. On the plus side, I've taken to blaming Lloyd if I say or do anything dumb. For example: I recently laughed at a Red Bull commercial. Perfect opportunity to blame Lloyd.

I'm looking forward to getting back to my "normal" life, and am hoping to start back to work around the end of October. I am still not quite myself (largely due to the pain medicine I still need), and my body still feels like it belongs to someone else—I definitely have a lot of healing yet to do. But soon I will rejoin the world, and I look forward to seeing all of you. Thank you for keeping me connected, as well as for all of the prayers and good wishes. I think I still need them :)

Love, -Kristina (and Mark)

The identity of Lloyd

Thursday, September 11, 2008
Subject: Lloyd's identity

Today we met with Dr. Lim and learned what Lloyd is. First, we learned that he was removed at a terrific rate. After reviewing the post-operative MRI with the radiologist, Dr. Lim estimates the removal at around 95%. This is really great news. Also, getting a diagnosis is quite a relief—there was a chance that this would remain a mystery.

The diagnosis is, naturally, complicated in what it means. Lloyd is a Level 2 Fibrillary Astrocytoma. This is kind of good and kind of not. The fact that it is a level 2 makes all the difference—this particular tumor is extremely bad if it is a level 3 or 4 (the levels are 1-4, with 2 being the lowest possible if it is actually inside the brain, which mine was). It is not benign. How malignant it is isn’t clear yet.

Our next step is to meet with a brain tumor specialist at Hopkins, who will now take over treatment of the tumor that remains. Options mentioned so far include chemo, radiation, and simply “keeping an eye on it.” We will know more after meeting with the new doctor, hopefully next week.

I had the staples removed today, which means that my scar is sadly less cool-looking, but much more comfortable. I return to Dr. Lim for follow-up in six weeks—apparently it takes quite a while to heal. I asked him some questions I had about the surgery & learned that a rectangular piece of skull was cut out—roughly where my scar outlined—and was attached back with titanium plates after the brain surgery. The brain was opened about the size of a quarter, Lloyd was extracted, and the brain collapsed back onto itself the way it was pre-tumor. Dr. Lim also told me about the decision during surgery to either drill into the bone of my ear or risk getting closer to the speech region of my brain- he chose to cut into my ear. I am almost entirely deaf in my left ear, though it does “pop” sometimes. He tells me that this will get better, but that it will likely take several months.

I remain on anti-seizure and pain medications, both of which make me feel odd, but you’d think I’d be accepting it as the status quo pretty soon. I am finding that I need less pain medication as time goes by, though it is a very slow downgrade. I get tired very easily, still, but am feeling more like myself every day. For those who might be wondering if Mark and I are ready to kill each other—no, we have always weirdly enjoyed being together A LOT, so we are happy as clams. Most people gag a little when they hear this, but it’s true. What can I say—we like each other. Also, I have a brain tumor and therefore get anything I want. That helps.

We miss everyone and love hearing from you. We will keep you posted on what we learn from the new doctor & what the next steps will be. Thanks for keeping me in your prayers.

Love, -Kristina (& Mark)

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!

The most bitchin' scar in the history of the world

Sent: Thursday, August 28, 2008 2:11 PM
Subject: Hi everyone- I return to the land of the living and slightly non-grumpy

Well, here I sit in my bed in the "step-down" neurologic unit at Johns Hopkins. I have to say that I am a MUCH happier Kristina today than I have been since Tuesday. Boy, did this hurt! My pain is finally under control, I've even been up on my feet as of today, and I got some sleep last night. The first night after the surgery they don't even pretend to let you sleep :)

I am recovering well, and I can even read. The only "problems" I've really got at the moment are that some muscle had to be cut near my left ear—which is painful—and this same set of circumstances has affected my hearing ability in my left ear as well, possibly permanently, but still not that big of a deal.

My surgeon is very, very pleased with the operation, and he estimates that we have removed 70-80% of Lloyd. It will be probably two weeks before we receive any pathology about what he is. However, we can always go back in to remove more, or use methods such as radiation or chemo—we will just have to see what the pathology tells us. At the moment, I am happy that he is so happy.

I am going to attach some photos that are NOT for the faint of heart! The first is a pre-surgery photo of the (eleven) charming green GPS stickers that Dr. Lim used, as well as his "tattoo" on my neck in purple. The next are post surgery, and you can see that I have got one heck of a look going on. Be forewarned- this is one colossal cut with a lot of staples. Don't open it if you think you'll be bothered. But, in the interest of maybe people wanting to see it—and since I'm really okay—I thought I'd send it around.

Thanks for all of the prayers and good wishes. Things really seem to be progressing well, and I look forward to being sent home probabl

Thursday, August 28, 2008 2:15 PM
Subject: sorry- didn't quite get that finished

So-

Thursday, August 28, 2008 2:19 PM
Subject: argh!

Well, I DO have a brain tumor, after all.

Okay, I'm just trying to say that I think I'll be sent home probably tomorrow, which is awesome, and that my only "job” for the next couple of weeks is to heal this giant thing on my head while they try to figure out what Lloyd is & we'll take next steps after that.

Thank you so, SO much for your thoughts, prayers, good wishes, and general thoughts for my safe recovery :) I think I'm coming along well, and I look totally awesome, so things are good. I am NOT in the mood for any sort of visiting yet, awesome as I know I am, but maybe by next week I'll be fit for the world.

Love, -Kristina

Brain surgery, ahoy!

Sent: Friday, August 22, 2008
Subject: Brain Surgery, here we come

Here is the big rude e-mail to everyone at once giving you the scoop on my doctor's appointment yesterday & how my brain is going to be scooped on Tuesday. Please forgive the lack of personalized e-mails—we're a little overwhelmed, and you all know us well enough to forgive us. And we do want to keep you “in the loop."

Yesterday, we met with Dr. Lim to discuss the results of the functional MRI and our options for proceeding. The good news is that the lesion is not as close to my speech regions as previously feared. The MRI photos were fascinating. The main ones we focused on were composites of the areas of brain activity engaged by the various tests I did during the functional MRI- little blobs of color showing up in the part of the brain engaged by each test (yellow blobs for the rhyming test, purple blobs for the thinking-up how many words start with "c", etc) So—looking at this composite of the colored blobs and the lesion, the good news is that there is an open path from my ear to the lesion, and no colored blobs in or that closely around the lesion. All of which is to say that the risk of surgery is far lower than it was feared.

Now that we have a clear pathway, it is time to go in and get Lloyd out. Until we nab some of him, we just don't know what he is. Dr. Lim will use a variety of computer accompaniments (he mentioned "brain GPS" and microscopes) while performing the surgery to safely take out as much of what he finds as is possible. He noted that he errs on the side of caution- as he can always go back in and take out more, and he wants to keep my stroke risk as low as possible (he estimates it at 1%). He also mentioned that the brain is the consistency of "butter", and that this lesion will likely be the consistency either of "jelly or margarine." Jelly would be easy to get a large percentage out; margarine would be significantly more difficult. Come on, jelly!

As the surgery progresses, he will be sending pieces of the removed items for pathology. This is probably not going to tell us what Lloyd is yet, but they will try. He told us that the pathology of this lesion will likely take two weeks, that he is using the man he considers the best pathologist in the world ("he writes the books that teach the other pathologists"), and that this man will likely want to run a huge variety of pathologic tests to determine what Lloyd is.

In other news, he mentioned that my lesion is "well-behaving" (not growing aggressively), and that I am young. He will be opening up my skull above my left ear. Just out of curiosity, and because I am, after all, a girl, I inquired as to whether I'd get to keep my hair. Essentially, they will shave the side of my head where they are cutting in. Which means the longer hair coming down from my crown/top of my head will sort of hang over the shaved area. Probably. This is obviously not a priority for anyone—I repeatedly felt the need to tell him I was simply curious and it didn't really matter—and he said that if he gets worried about hair falling in, he will shave as much as he needs. So, curiosity satisfied.

I will have my skull fastened back together with pins, my skin with staples. I'll be operated on on Tuesday and plan on being in the hospital through the weekend. Risks are the usual surgery risks (anesthesia is always a slight risk), infection, stroke, and possible brain damage, particularly speech elements and possibly memory. He mentioned that my speech may be affected for the first few days after surgery, and may self-resolve quickly. But, he seemed very confident and sort of matter-of-fact about the whole thing, and he qualified and gave percentages for his belief about the risks. We just really, really like him and feel confident with him.

In summary, we walked out of the office feeling great—celebratory, really. We are finally making progress, have a plan of action, and we're getting going SO SOON. Of course, we do not know what Lloyd is, but we WILL, and that is terrific news. And the risks of getting in there to get at him are significantly lower that we all feared, so that is great news. Just to be doing something is wonderful—it has been a long, long month. More for Mark, since I remember very little of the first weeks :)

We are in great moods, looking forward to getting going. Monday will be spent at the hospital doing all of the pre-surgery stuff—lab work, physicals, more MRIs, etc, etc. Tuesday I'll be admitted for the surgery, and I'm hoping to just be sedated for the rest of the week. I've had a horrible drug rash from my initial anti-seizure medication for the last week (that has NOT started getting better yet- I mean, seriously-- the brain tumor wasn't enough? I have to have a drug rash now on top of all of my other side effects? All of my brain drugs have these extra inserts in the pharmacy bags saying "please remember that your doctor has determined that the benefits of this drug outweigh the potential side effects"!), and the prospect of simply being comatose for a week sounds awesome right now.

Thanks for your thoughts, prayers, cards, treats, and general concern. It really does help to know that people are pulling for you, and we appreciate your love and concern. We will certainly let you know how it goes, and feel free to e-mail anytime, especially if you've got any questions. I mean, it IS interesting, and I don't mind at all. I think it is fascinating, and besides, I have one of the top ten brains in the world.

Love, -Kristina (& Mark)

Lloyd the brain tumor

Thursday, August 14, 2008
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

Functional MRI- fascinating! (just don't think about the tumor part...)

Wednesday, August 13, 2008
Subject: For Dr. Maurer (and Marsha, of course :)

Good morning, sir. I know how busy you must be today, but I thought you might like to hear a bit about my functional MRI.

I arrived at 8:30 and was taken immediately back to change (no metal was allowed anywhere on my body) and an IV was put into my arm. After the technician finished with me, the doctor arrived in my "changing room" with his laptop computer and spent an hour describing the test to me. Yes, an hour. He also pulled up the test on his computer to show me what I would be doing and have me practice. Now, it is worth mentioning that this guy is "the guy" for neuro-radiology. He said that there are only 4 centers like this in the country, and he is the head of the standard-setting body for the protocol and use of functional MRI. He, needless to say, was very excited about the whole thing. He was also on the "tumor board" that reviewed my case last week. He used the terms "left temporal lobe lesion" and "tumor" interchangeably and without reserve, which is also news, in a way.

I was put on a sliding bed and given headphones, a "panic ball" in my left hand, and a box with buttons in my right hand. They packed foam in around my head to keep it as still as possible (the doctor explained that stillness was extremely important, as even a millimeter would throw off the results- honestly, he said "millimeter"). Then they put a cage with bars I could see through around my head and a small TV screen about 6 inches in front of my face. At this point they slid me into the tube.

The tasks were designed to test my speech/language region, as that (and memory, which is harder to test for) is where my lesion is. I did tests for 30 seconds and "control" for 30 seconds for all of the tests. The idea being to watch the blood flow to the working region while I was engaged in the task they designed, then have a similar comparison when I wasn't actively engaged in the test. For example: they showed me words—two at a time—and I was to think to myself whether or not they rhymed. If they did, I was to push the button on my box. After thirty seconds, a line drawing (of nothing) came on the screen and I was to simply stare at it and keep my mind free. Another test was showing me pictures—clip art pictures of things like lighting bolts, a church, a horse—and I was to simply think to myself what the picture was of. Another was showing me a letter— "c" —and I was to think to myself all of the words I could that began with "c" for several seconds before the next letter came up. The control for that one was a kind of matching test where I was to think about whether two rows of lines, drawn in a pattern, matched each other.

There was an audio test which involved my listening to a story for 30 seconds and trying to visualize the story as I heard it, interspersed with 30 seconds of garbled sound (speech played backwards, they told me).

At the end they did two other tests—one to simply map my motor function region for reference, which involved tapping my fingers to my thumbs, and a long scan of my whole brain while I did nothing—which I barely remember because they suddenly pumped a lot of contrast solution into me through my IV, I felt it "hit me" all over, and was promptly knocked out until they came in to take me out of the tube. I was actually in the tube for 2 hours.

The doctor came to see me again (he was present for the administration of the whole test) and told me that he believed that they got several very good tests out of the lot. Of course they still need to read them, but it is a relief to hear that this test is probably a success. I haven't heard otherwise yet, so I believe this one is done.

He mentioned that this test will help my surgeon decide how to proceed with the treatment of the tumor (his words). Depending on the location, the risk of surgery is significantly greater. They will have a meeting together to discuss the results, and I will meet with Dr. Lim next Thursday to find out what they think we should do. The great thing about being with Johns Hopkins Neurology is that I don't need to second-guess their decision. I already know I am in the absolute best hands, and I will do whatever they recommend without hesitation. That is a great relief—to know that you are getting the best care. Now I just have to cool my heels for ANOTHER week and try to stay positive. There are times when it distinctly does not sound good, but I have to keep reminding myself that we simply do not know yet what it is, and borrowing trouble never helped anyone.

I realize this is terribly long-winded, but I thought you would be interested. I intend to write a shorter thank-you letter/update to the staff to thank you all for the wonderful collection gift you gave me. And thank you (and Mrs. Jernigan) again for the nice visit and cake- it was delicious & we really appreciate the support. Here's hoping next year's birthday doesn't involve an MRI :)

-Kristina

Road Map

Wednesday, August 13, 2008
Subject: For the wonderful NCB staff

Thank you all so very much for the collection you took for me. Bridgid arranged an on-line gift certificate to one of my favorite stores and it was such fun to pick out some nice treats for myself. And, since it was my birthday, it was especially fun!

In brain news, I actually spent a good piece of my birthday having a Functional MRI. I don't think too many people can say that! This test gives my brain surgeon a "road map" of my left temporal lobe to help him decide how to treat me. The left temporal lobe is responsible for speech, language, and—to an extent that is difficult to measure—memory. This test will give him a better idea of how my brain works and more specific information about the risks of surgery. The test will take about a week to be fully interpreted, and I will then meet with the neurosurgeon next Thursday to find out how they think we should proceed. The doctors yesterday called it a "tumor," so I am now calling it that, too. I don't believe that is necessarily a bad thing, just a more accurate description of what we are (probably) dealing with.

As you can imagine, we are tired, frustrated, and emotional. It has been three weeks, we still don't know what it is or what to do, and it will be another week before we learn anything else. I can't tell you enough how much we appreciate your thoughts and prayers. Just knowing that I have a huge group of people who want me to get better convinces me that this is all going to be alright. I really believe that thought and prayer create reality, and I thank you from the bottom of my heart for helping me get better.

Love, -Kristina

Finally, a neuro-surgeon

Sent: Thursday, July 31, 2008
Subject: Kristina's Brain- update (please share with anyone who may be interested)

Hi, all. Having seen my neurosurgeon today, here is where we stand. I’ll start by saying that even though I’m getting better every day (speaking, spelling, reading, staying awake), I still feel fairly out of my gourd. I’m on a lot of brain medications, and they can’t help but take their toll.

We still do not know what is in my brain—on the left side, in the “speech region,” is either a kind of infection or a tumor. The tests so far have not been able to tell us what it is. The neurosurgeon wants to present all of my tests to a board of his peers at the Johns Hopkins Neurology Department on Monday to discuss what steps to take next—likely either a needle biopsy of the brain region or a “functional MRI,” which would involve brain function testing while I speak. The spinal fluid which was drawn last week shows no malignant cells, which is good, and the doctor believes that this “tumor” has been building for weeks or months. It sounds as though his main concern for me is my speech region, which makes me feel better since my main concern has been cancer. It may yet be cancer, but at least right now that does not seem to be the thought at the top of the doctors’ minds.

There isn’t any good way to get a brain mass, but the odds that I would do it at such a young age in the medically fantastic city of Baltimore are pretty staggering. My awesome husband has been able to stay with me full-time, and we are so lucky that we both have fantastic jobs that are supporting us through this. It is hard to imagine being productive ever again, but I’m hoping that this can be addressed and behind us in a matter of weeks. Just last Tuesday I couldn’t read, and here I am typing again, and that is certainly encouraging.

Thank you again for all of your thoughts, cards, treats, and good wishes. I will keep you posted when we learn what the doctors decide to do with me. Thinking of everyone pulling for me is truly the last thing I think of before I fall asleep at night and the first thing I think of when I wake up, and I can’t thank you enough.

Love, -Kristina

Here we go...

Sent: Wednesday, July 30, 2008
Subject: Kristina's brain

Hi, Marsha. Would you please share this with Dr. Maurer and anyone else who may be interested? Thank you!

Being a curious person, I would certainly want to know what was going on if someone I knew was having brain surgery. My family and I have been so appreciative of the cards, flowers, food, and general good wishes that everyone has been sending our way for the last week. Thank you so much for keeping us in your thoughts. Here is what has been happening:

Last Monday night I had a seizure. I remember nothing of it, and most of last week is a total loss. Apparently there is a mass in my brain, behind my left eyebrow, which does not belong. This portion of the brain is responsible for memory, so the first few days—when it was particularly inflamed—I couldn't read, spell, or remember virtually anything. The medicines I am on now are keeping this in check, and I am starting to be more of myself again. In the process of having the seizure, I whacked my ribs, which is also finally subsiding, so things are starting to heal & and I'm not quite so reliant on the pain medications.

We do not know why there is a mass in my brain. We aren't sure yet that it is a mass. It might be a tumor, it might be inflammation. The tests so far have been inconclusive. What we do know is that it is "non-enhanced,” which is less likely to be cancerous. Also, I am young and otherwise healthy. Baltimore is a city with great medicine, and we are lucky enough to have lots of friends with pull to get me in to the best doctors. Tomorrow we meet with a famous neurosurgeon at Johns Hopkins to discuss my situation, and he truly is the best in the country. Mark is ensuring that I get the best care that exists. If anyone has a chance of coming through this with a clean bill of health, it is me.

I cannot thank you enough for your thoughts and good wishes. There is something very comforting about knowing that people are pulling for you. If anyone would like to email me, I can be reached at this address: k@yahoo.com. I'll be happy to answer questions and give updates as they are available—again, I know how curious I would be. After all, it isn't every day you meet someone who gets to have brain surgery!

-Kristina

This photo was taken two days before Lloyd announced himself--Sansi came for a visit, we went swimming at Mom's house, and Kelly announced she was pregnant! It was a perfect weekend :)