Calm

My scan showed “no remarkable growth” since February—which means Lloyd has done nothing. I am back in my cone of relative sanity for another eight weeks! Actually, to be more accurate, it is more like seven weeks of sanity. The eighth week is all character-building.

Dr. G told us today that Lloyd is still “rock solid,” that he pulled up my last three scans to compare to this scan (giving him a total of eight months to look at) and saw “no remarkable growth” in any of them, and then proceeded to tell us that Lloyd “will grow some day, as sure as the three of us are sitting here now.” Well, what can I say—I’ve gotten used to him. We actually laughed a little on the way home about it. This, in itself, is remarkable. There was a time when that statement would have sent tears streaming down my face immediately and depressed me for days. Now I can (almost always) take it for what it is—a possibility. And I have many, many possibilities!

Thank you all for you kind, kind words of love and support this week. You have all helped my heart –again! –more than I imagined. The photo below is from this afternoon at the Hopkins campus (a beautiful place to spend the day, frankly). The sun is streaming down on me and I am beaming. Interestingly, it is before I got my good news. I kind of imagine it being all of you and your good thoughts and wishes streaming down onto me, as silly as some may think that is. Either way, it is a beautiful spring day with one very happy girl—whichever way her news was going to go.

Love, -Kristina

The What Before the Storm?

I thought for an interesting change of pace, or perhaps simply as a challenge to myself, I would write this newsletter right before I go to my Dr. Day. Here is what has happened so far: I wrote the first sentence, stopped dead (if you’ll excuse the morbid play on words), and sat here feeling my stomach curling into a tight knot for approximately five minutes. Now I did it again. At this rate, I won’t have time to write it and my insides will be irretrievably damaged. What a swell idea this is!

Today is Monday, March 29, 2010. This Thursday will be my tenth official Dr. Day. I have certainly had many more days with doctors since Lloyd arrived: days spent inside large tubes, days spent with small tubes jammed inside me, days receiving information of a kind I never imagined about my own body. I’ve spent days of my life dressed in all-cotton clothing with no underwire in public without shame (I said underwire, people. Wire.) And I plan to do it again—approximately every two months.

Every two months—that is the hardest part. But then I look at people who are already stage 4, fighting for every day they get, and I realize that I am just borrowing trouble. I’m nowhere near fighting for days or months yet. No one knows what is coming in two months. I just happen to have a standing appointment.

I generally stay away from cancer sites, as I am easily upset. I’m weak, and I know it. (Mark is in charge of research because I can’t even handle reading it— I only see the bad. Also, he’s awesome at research.) I do have some cancer friends online, but I have to be in a very strong frame of mind to venture on to see them. The first couple of friends I made who had my condition are gone now. It is not easy.

At any rate, I spoke with a young girl online recently who had just been given some news about her cancer that sounded as though she might not be—to her surprise—“curable” after all. She is struggling with the concept of “living while dying,” deciding whether to pursue a degree, and simply “tolerating the mundane.” LOL! How true! I needed advice on that before I had cancer! How quickly we forget that cancer didn’t cause our problems, it only serves as a convenient whipping boy for them. She asked us for advice on how we cope, and here is what I said:

It is super hard. SUPER hard, I know. But life is not about the promise of a collection of years. It also isn't about "live each day like it is your last" (although I know some people espouse this, I find it impossible. Who would pay their bills, buy toilet paper, or clean the cat box?) There has to be a livable, happy medium in there. You will find it, and you will forget it sometimes and have bad days and moments, but you will find it again.

Here is my advice, which you can take or discard as you like--that is the beauty of advice! Take baby steps out onto this new cancer life thing. You seem pretty new to it (I am only a year and a half in myself), so you're learning that it is, in fact, still just life. Make some plans. Maybe some shorter term ones if you are more comfortable with that, or just go for the longer term ones. Why not? What the heck else are you going to do, just sit around and wait to die? That isn't living. As long as you ARE living, you might as well do it. Do what you were going to do anyway, pre-cancer showing up, for as long as you possibly can. Who knows, you might get to do it indefinitely. That is my outlook: wouldn't it totally blow if I stopped doing everything I was going to do (pre-Lloyd the brain tumor) and then I ended up living to 90? What a GD waste! I won't do that. I at least am in charge of that much.

Don't get me wrong--I am a total feel sorry for myself, lay on the floor crying girl once or twice a month, minimum, but it usually passes quickly. It happened a LOT more in the beginning. My uncertainty level is through the roof, and will likely never change. It blows.

Also: tolerating the mundane is hard. But I don't think escaping to an exotic locale would actually help any, really. I've thought about quitting my job and just hanging out, but what would I do? What meaning would I have? Sometimes there are threads about that..."if you had a million dollars, what would you do?" To me, the answers seem pretty trite. Sure, the beach is nice. But all day, every day? What would you DO? You have to have a life. You can't just sit around waiting to die, because your doctors sure as heck aren't giving you "dying" treatments--they are giving you "saving your life" treatments.

I truly wish you the best, and I hope I haven't talked your ear off. I do, honestly, know that this sucks. SU-uuuuucks. And I am really, really sorry. But you are going to be okay.

That is what I told this young girl, who may or may not be dying. Just as I may or may not be dying—as may anyone. And why am I putting it here now? Because that day, that moment that I took to write her, when I had the strength and clearness of thought to tell her exactly what I believed—what I do believe—now still exists for me to cling to.

Because right now, this week, I need it.

Love, -Kristina

*Update: Please visit the main Lloyd Newsletter page for my post-Dr. Day message, "Calm." (http://thelloydnewsletter.blogspot.com/)

Lloyd is Attention Starved

Apparently, much like the faces you see staring at you from racks of magazines surrounding the checkout line at the grocery store, Lloyd demands attention. He doesn’t necessarily have anything new to contribute: he hasn’t broadened his horizons, explored new territories, or learned any new languages. He hasn’t met anyone new. He hasn’t even gained or lost weight. He is, in the words of Dr. G at today’s Dr. Day, “stable, stable, stable, stable, stable.” He does continue to show the same fluid flair which has caused so much concern for the past four months—but even that hasn’t changed. What a drama queen! He is too lazy to grow (not that I am complaining), so he throws up a fluid flare which sends my entire tumor board into meetings about me. My worry level went up.

Now, upon this third Dr. Day since the fluid flare arrived, it seems that it may turn out to be a big nothing. I am incredibly grateful that my doctors take everything so seriously. I am delighted that this flare might mean nothing after all. I am learning—slowly, with the application of beatings about the head—to not get so worked up over everything. It really is my doctors’ job to do that. It is hard, though, to stay calm when your entire board is clearly worried. I get better and better at this, Lloyd, and I’m sticking with my trusty t-shirt from now on. *For those who haven't read my December 26th post, that t-shirt reads, "Screw Lloyd")

I have other terrific news to report: Five hundred and thirty four. That is the number of days I went without driving, which came to an end on January seventh. I was shocked when I saw the total number of non-driving days. Considering I only had the one loss-of-consciousness seizure (July 2008), it seemed very surreal. However, even the “word seizures” count, so I was extremely careful to follow the law exactly. The law, naturally, couldn’t care less about when they got around to me, but that is all behind us now, and I didn’t even have to take any tests! It seems that the reviewing doctors get to choose what to require from us, and mine decided I was competent without any driving examination at all. I do have to submit medical reports every three months, but I’m a driver again! I’m taking it very slowly, only driving on surface streets while alone, and doing some practice larger road driving with Mark along. I have to learn to trust myself again.

Tomorrow we are expecting 2 feet of snow, and we are happily prepared to enjoy it. I finished War and Peace last week and just finished Youth in Revolt yesterday. I suppose that is the greatest example I could ever give of eccentricity in taste, and it wasn’t even intentional-LOL. I hope everyone has a terrific time enjoying whatever weather is falling from the sky onto them. Let’s all let our worry levels go down.

Love,
Kristina (& Mark)

Merry Christmas to Me!!!

Today is Boxing Day, and I received a surprise box in the mail from my friend Kelly with THE GREATEST present inside! Kelly is one of my absolute oldest friends, her parent's house is a stone's throw from my grandparents' (now my sister's) farm. We had dinner last week, and after reading my most recent post online she put up a comment on Facebook saying that I, "look, sound and act fantastic. Screw Lloyd." I thought that was funny, and a few of us laughed at in on Facebook. I commented as follows: "Why, thank you! There is a "F*ck Cancer" t-shirt & hat company. I think I should make myself some "Screw Lloyd" apparel. I wonder if it would get lost in translation, though—lol! Like I'm some loose woman looking for guys named Lloyd..." Several of my friends commented they'd like a "Screw Lloyd" shirt when they came out.

Well, guess what arrived in my mail today!!! I had to take a photo to share my fabulous gift with everyone. Ho ho ho, Merry Christmas!!!

Love, Kristina

Lloyd is a Bit Fussy

Hello, everyone!
I skipped a Dr. Day update (making this post a full four months overdue) because I was on vacation the Monday we got the results in October. Furthermore, I spent a decent portion of the fall travelling hither and thither. This means I am long winded—Boy-Howdy! If you just want to read about Lloyd, I’ve put it all right up here at the top. For those who want to read about my travels, interest in cephalopods, etc., I’ll start blabbing about my life after the Lloyd Report:

Lloyd is being just a little fussy. He is not growing—there is no growth shown on any slides. Also, I feel fine (how I feel counts for a lot to the doctors). However, there is a small “fluid flair” on the rear of the tumor region. This could be indicative of activity. They are pulling older slides to study it a bit more closely, but in all practical terms this means nothing for me: I’m still on the same two-month “watch and see” schedule. We all know that Lloyd is not gone; he is just hanging out quietly. I would have liked for him to have never done anything else at all. I’d like to hope he doesn’t grow at all. However, if all I’ve had is a fluid flare over the course of fifteen months, I’m still doing pretty darn well.

Speaking of doing well, I have now adapted to my drugs as well as I think I ever will. I’d like to think I’m even my friendly and pleasant self again. I hardly ever snap at people anymore, and when I do, well—naturally, I’m completely in the right (smile). I still have difficulty finding the words I want in conversation, but I’ve decided this is part of life now, and the less I fret about it the easier it seems to get. I also notice that this is significantly worse the hour or so after I take my medication twice a day, so I try to schedule around that. I still cry terribly easily—a trait I never had before—and I happily blame that on the medicine, too.

I have applied to Maryland to have my driver’s license reinstated and the state Medical Review Board is reviewing my case. If they decide to approve me, I will have to take all of the tests again. Yes, all of the tests. It feels a bit like that dream where you never graduated from high school—you forgot to show up for one class all semester and suddenly have to pass the final exam to graduate—except I have to go back and pass my written driving test. But first the state has to process my paperwork, and it hasn’t gotten around to that for 3 months, so obviously no one (else) is in a hurry.

My birthday was in August, and was remarkable in that I spent the prior birthday having a functional MRI. What a difference a year makes! Also, I couldn’t read very much on my last birthday, and this year I got a Kindle. Thank goodness there is such a huge crop of e-readers about to flood the market—accessibility has to be on the horizon. Amazon, are you listening? Do you not want more customers? My blind friends want to buy your products. You’re going to be sorry when your door isn’t the only one they have to knock at.

I have been reading voraciously this year. I suppose in part to help my vocabulary, in part to prove to myself that I still have the brain function to do it, but really I just enjoy it. I genuinely like the classics. Recently I’ve finished Crime and Punishment, The Picture of Dorian Gray, and Tess of the d’Urbervilles, and I’m currently reading War and Peace. (I overdosed on Austen and Dickens for a while and decided I needed a Russian counterbalance.) Pleasure reading was a huge part of my life pre-Lloyd, so I’m happy to report that I’m simply back to normal.

We took a vacation in October to St. Thomas in the Caribbean.
Our version of island vacationing is snorkeling and eating. This is, if there isn’t any surf—which there wasn’t. We own our own gear, so we just rented a Jeep and took maps of the most likely looking spots to find abundant sea life. Mark downloaded a program online to practice driving on the left side of the road before we went. On our very first reef, a young sea turtle startled me by swimming up beside me to see what I was. I am obsessed with cephalopods—octopus and cuttlefish in particular. They are so intelligent and interesting, and I am fascinated with their interest in us. Cuttlefish, especially, are so engaged and curious about humans. A pair on this trip came up to us, flashing their spectrum of colored lights in patterns that I can only wish I understood, and actually touched “hands” with us. I floated in the water with them for probably twenty minutes before a barracuda came up and became a pest. Fascinating creatures. Even at the aquarium, they will often come up to the window to start a “dialog” with the humans on the other side of the glass.

On Halloween weekend we found ourselves in Salem, Massachusetts, for the wedding of my dear friend Melissa. She was actually married November 1 in Beverly, but it was certainly fun to be right next door in Salem the day before for Halloween. She, her charming husband, Memo, beautiful son, Luca, and her extraordinary family were a delight to spend time with. The wedding was wonderful, the beautiful fall weather & scenery of the Massachusetts coast was almost painfully stunning, the bride (obviously) was a knock-out—but the love that family had was simply amazing. We enjoyed our time with them immensely.

Thanksgiving was spent with our family back up in almost the same place! Mark’s sister, Sara, and brother in law, Mike, live in Winchester, Massachusetts, and we spend Thanksgiving there every year with them, my niece, Ava, nephew, Jonathan, and Mark’s parents, Harriet and Maneck. Often Mike’s parents are with us, too, and it is a big house-full for as long as we can get everyone together for the holiday. The kids always love to see Uncle Mark, as he is usually game for just about anything they are. Aunt Kristina tries to keep up, but isn’t that what they invented the position of “referee” for, anyway? We had a great time, as always, and even had two new additions to the family this year in the form of the kids’ new twin kittens.

Piggles—that is to say, Nathan, my sister’s son, is growing like a little weed and is happy as a little. . . well, piggy. He always smiles when he sees me, and never cries when I am around, which certainly bodes well for his little Christmas stocking from Aunt Kristina. Considering all he wants is to be held and put down at his caprice and something to chew on, though, this is hardly difficult.

This is what has been going on in my life. I’ve been keeping busy. Work has been busy and good. I’m lucky—I’m well enough to do all of this. I sleep a lot so that I can stay this busy—at least 8-9 hours a night, but that isn’t so very weird. I have to be careful not to try to do too much or to over-tire myself. As long as I get enough rest, regularly, I’m fine. I hope to stay this busy, this fine, this productive, and this happy for a long, long time.

I wish everyone reading this the same happiness I have. I am the luckiest, happiest, most loved person I know. If you think I’m wrong, that perhaps you have that title, then only you know how happy I am. Ah, see? That’s that Jane Austen overload sneaking out. Better stop before I invent a bishop.

I wish you all a very, very happy holiday season. As I am a person who celebrates Christmas, I would like to say, Merry Christmas!

Love, Kristina

Mark says, “Happy Chanukah!”

Lloyd is soooooo innocent

It is true. Lloyd is behaving nicely—remaining stable, and “stable is good!” Dr. G added with an exclamation point to the top of my last report. This was probably a special treat to make up for the fact that we had to wait through Thursday, Friday, and an entire weekend to get the report after our most recent Doctor Day. Ugh—worst ever. I followed my difficult, but smart, vow not to read reports any more & had it sent directly to Mark. He extracted a sentence for me (it wasn’t good enough to just be told it was okay, I had to see something official) & included the Dr. G “treat.” He is so good to me.

This is true all the time, but it is especially true after the past few months. While Lloyd has been oh-so-innocently behaving himself, the side effects of his presence have been wreaking some havoc in Kristina land. I’ve got a new doctor in my personal arsenal: Dr. Rabin is now my seizure specialist. We met him in May to discuss my ongoing mini-seizures (my term). He asked if I had noticed any changes in my personality since my Keppra dosage had been increased to the highest possible level by Dr. G in January. I said ‘no,’ then he asked Mark—who promptly cowered and acted like I might kick him. I had been grumpy, but I just figured having a brain tumor would tend to make a person a little angry with the world. Turns out high levels of Keppra have a side effect of hostility, aggression, and mood swings. It had never occurred to me that I could blame my bad mood on my drugs—I’m completely unaccountable for my actions! Nice!

I’d love to say that I was taken off of the angry drugs, but instead I had another drug added to them. Now I’m mean AND stupid. Topamax, widely nicknamed stupamax, is a different kind of anti-seizure drug which we're using in tandem with my Keppra. Dr. R told me that if I could suffer through the first couple of months, when the side effects would be the worst, he thought I would be very happy with it. And suffer I have. My language abilities dropped back down to the floor. Were it not for Microsoft Word I could not have performed my job—I simply could not spell. I am back to having a very difficult time with names, even those of people I know very well. I dislike talking on the phone even more than usual. I get overwhelmed quickly if I drop a word, or if I feel like I am required to reply with any speed (ordering lunch at a stand, for example: I panic). Things are beginning to get better, but it has been a very difficult few months. I am starting to feel like myself again, as he predicted I would, but it has been a fairly dark process. I have not had any more little seizures, so I'm trading my language functions (& having a personality worth speaking to) for the possibility of driving again. Fingers crossed, I'm hoping to get the paperwork to start the process of reapplying for my license in September. The plan is to also start tapering off of some of the mean medicine (Keppra) then, so hopefully I'll be a little nicer. I am trying!

There is always good news, and aside from the new medicine I am really feeling quite well. Occasional grumpiness and inability to use the English language effectively are not the worst things that could happen to a person, especially when you've got cancer. I am healthy & feeling well, most of the time I'm sane enough to realize how truly happy I am, and I am doing everything I want to be doing. Work has been challenging and rewarding— the NFB National Convention in Detroit just concluded, and what an amazing event that was! Mark came with me (it was his first national convention), and naturally he got trapped in the elevator with the guide pony. He’ll tell you all about it if you ask him.

We have been working in our garden & have somehow acquired a small colony of praying mantises that we like to watch. We spent yesterday with my family by the pool, almost exactly as we did one year ago, July 20, 2008—the day before I had my seizure. The additions to the family this year were Lloyd and Nathan, but only Nathan got any attention or made any difference. How about that? A whole year, and two huge HUGE changes, and really only one made any difference in our day. He is now twelve pounds of squealing, cooing boy who is possibly already past the point of ever escaping the nickname of "piggle." And he smiles at me.

Love, Kristina (& Mark)


Aunt Kristina has excellent taste in infant wear, though with this sly smile it hardly matters. Can you tell this boy is going to have the world wrapped around his little piggies?

Lloyd Hates Veggies

Last Thursday was Lloyd’s most recent photoshoot, and I am pleased to announce that he has not done a thing lately. Nothing. Why he is quietly sitting still is a (very pleasant) mystery—perhaps he is lazy, or perhaps the influx of vegetables is holding him at bay. Whatever the reason, the result is that he is currently not growing, and this is a very, very good thing. The longer he waits to grow, the longer I have without needing further treatment, and the more research can be done to find a cure for this disease.

Speaking of cures, I got a widely circulated e-mail last month about a “secret” cure for cancer. Apparently, eating pureed canned asparagus twice daily is a (shh!) secret cure for cancer that has been known about by respected cancer programs since the late 1970’s. And here we thought they had our best interests at heart. I suppose if everyone knew about it, there wouldn’t be enough asparagus to go around. This must be why only the very important and powerful are cured of cancer. Just believe all of that, and never mind the fact that Ted Kennedy is about to die from my condition: He obviously didn’t have the resources to acquire the secret asparagus cure.

Tempting as it is to run out and buy 30 pounds of canned asparagus, I think I’ll stick to juicing some fruits and veggies a few times a week. It is so tempting to try anything—anything!—when you are panicked and desperate. I am lucky that I trust my doctors and my own mind. Or at least I trust my doctors and Mark’s mind—mine can be a little iffy these days.

I continue to have mini seizures, generally one or two a week. I usually know one is starting when something says “French detergent strip.” My brain is so weird. One of the things I enjoy trying to do now is to look at actual print while a seizure is happening. The letters totally change. For example, the cover of “Vogue” said “Charles.” I can now vocalize a little bit sometimes, and I like to try to say the words aloud for Mark. I can only manage to say maybe six or eight (out of hundreds or thousands, depending on the length of the seizure), but it feels like a victory, and they are usually quite funny.

Everything else is going well in our lives. I’m riding my Segway to work when the weather is nice enough (no drivers license required!), and I’m about to take my first trip without Mark. The National Federation of the Blind has been invited to be a part of the launch of the space shuttle, which will carry our Louis Braille coins to space, and I will be accompanying Dr. Maurer to Florida for this exciting event. I know I’ll get to see the launch, but what I’m hoping is to be able to smell it. From a safe distance, of course. I think the smell would be fascinating.

Thank you for taking the time to look in on us, and for caring about how we’re doing. I am doing really very well right now, and for the foreseeable future. Dr. G even asked, for the first time, how soon we wanted to come back. After the next two-month MRI, we may decide to wait a little longer in between. Now THAT is good news!

Love, -Kristina (& Mark)

Mark's parents came for a visit at the perfect time of year--the pear trees along our street bloom for only one week, and they are spectacular. This photo was taken just as a storm was blowing in. Once the wind picked up, the petals looked like snow falling outside the windows.

Lloyd or Louis?

Living with Lloyd is getting easier. He continues to hang around lazily in my brain, I continue to ignore him, and he pokes me in the language region every few days just so I don’t forget him. You know, just your average life…

Last Thursday, March 5, was a Doctor Day. This time I sneezed in the middle of one of the MRI scans. I’ve been wondering when that would happen—it was only a matter of time. Oddly, they didn’t stop the one I sneezed in the middle of. We finished it, then did it all over. It is hard to gauge time “in the tube,” but I’d estimate that portion alone to be 10 minutes. There are maybe five portions in all. The last one is always the contrast solution. They pull me out of the tube, inject contrast solution into my IV, and I am practically useless for the next hour. I used to fall asleep almost instantly, but now I (unfortunately) just float in idiot limbo. I’d much rather sleep.

The final verdict was that Lloyd is “essentially stable.” Ordinarily, the MRI report is in the hands of my oncologist by the time I get to him. This time we had to wait a day to get the report. This stinks because, a) I’m already so keyed-up that waiting a day seems impossible, and b) reading reports is the worst. Seeing it written clinically makes it all so real and really bad-sounding. Here is the actual language of the report conclusion:

IMPRESSION:
Essentially stable examination since 1-8-09 with T2/flair hyperintense expansion of much of the left temporal lobe and evidence for prior biopsy of pathologically proven astrocytoma. Minimal mass effect as above. Very minimal linear enhancement in the region of the biopsy tract is again noted and is most likely postoperative in etiology.

I know that my reaction is totally illogical and ridiculous, but I read that—stunned—and think to myself, “Oh my God! There is something IN my BRAIN and it is GROWING!!!”

Of course there is something in my brain and it is growing. This isn’t alarming news; this is Lloyd. I already know this. I’ve had brain surgery, for crying out loud. I don’t know why reading it like that makes it so much worse, but somehow it does. I think the days of allowing myself to read my reports are over. At least until there is some new finding, and maybe not even then. I shall simply resist, knowing it is for my own good. This will be hard.

I do not forget, however, that even though the language freaks me out, this is still totally good news. I don’t go back for another two months, so we’ll spend the spring enjoying ignoring Lloyd as much as possible. I feel well, though I continue to have mini seizures periodically. I’m getting used to them, and no one in the medical community seems very worried. Dr. G has decided to add a neurologist to my team to handle this particular problem. Having not solved it with the increase in my medication two months ago, he tells us that this is likely a permanent issue to deal with. Interestingly, I’ve noticed that my seizures now almost always include “French” within the first dozen or so words racing manically around my brain. I have absolutely no clues to this one—I’m not French, I’m not particularly interested in France, I didn’t even take French as my language elective. Perhaps Lloyd is campaigning to be renamed “Louis.”

The weather here in Baltimore is teasing us about spring. The daffodils and crocus are beginning to bloom, but the cold has returned after only a handful of warm days. As I’ve told Mark many times, I have seen snow on the ground on far more Easters than Christmases. The robins and doves are paying no mind to my warnings, and are busily building nests and singing about it outside our bedroom windows. Nathan Anderson Grant was born on February 28 (he was apparently determined to avoid a March birthday, as he arrived a week or two early), and he and my sister are now both doing quite well. Mark had a birthday also, but as he seems to have some sort of contract with the devil to remain looking 28 for his entire life, it hardly even counts.

Here’s wishing all of us a happy and healthy spring. After all, opening day at Oriole Park at Camden Yards is only 24 days away—it MUST be spring!

Love, -Kristina (& Mark)

Laziness is a virtue

Thursday, January 8, 2009
Subject: Lloyd in winter

Hello, all. Today was a Doctor Day, so I thought I'd write with a little Lloyd news. We had the second of our 2 month follow-up MRI's today, which was officially the first to show us how fast Lloyd grows. Or, as I prefer, how lazy he is. The news? He is a lazy, lazy guy. My MRI showed "no significant growth," and my oncologist (who is known for his ability to upset me even over the most cheerful of news), actually used the phrase "rock solid" to describe my current status. This is what we've been hoping for—and all of the tests had hinted we'd find—Lloyd is (currently) very slow growing. Dr. G, of course, had to throw in that radiation is not a maybe, but only a when—“a matter of timing," he said. However, I'll take the later rather than the sooner and be happy with it!

That is the good news. The frustrating news is that I had another seizure in early December & have had about 5 more over the last 4 weeks. I don't lose consciousness, memory, or awareness, so I didn't even realize it was a seizure at first. Clearly something was very wrong, but I didn’t realize it was a proper “seizure.” The things you learn when you get a disease, right? What happens is that I suddenly start seeing written words where there are none. They are relevant to the object—for example, one day I was pinning a green dress and suddenly the words “green”, “fabric”, “garment”, etc. started appearing on it. Words start showing up on everything I see in a stream-of-conscious way, one leading into another; sometimes in ways that only make sense to me (“blue” might lead into “porch” because my grandparent’s porch was painted blue). In addition, while these words are racing around, I can’t speak any of them. Or write. I can’t express myself in language at all—I just have to wait until it passes. The real trick is to stay calm, because as soon as it starts happening my stomach hits the floor in terror & suddenly I’ve just made things a hundred times worse with plain old panic. The first of these new seizures left me unable to read for about a day, though the subsequent ones haven’t really done that. They do affect my vocabulary for a few days each time, which is super frustrating. And my spelling ability- grrr. Couldn’t I just have the cancer without the idiot sprinkles on top? Lol. Fortunately, my boss & coworkers have been very forgiving of my occasional loss of language/grammar abilities, and I am very, very happy to be back at work. Dr. G decided today to increase my anti-seizure medicine by 50%, so hopefully I’ll be right as rain very soon. He did, however, decline to sign my required Maryland paperwork for re-application for my driver’s license until I’ve gone another 3 months with no seizures.

That about wraps up the Lloyd news right now. We had a lovely holiday season- we spent Thanksgiving with Mark’s family in Boston, we had a vacation to London the week before Christmas, and we spent Christmas with my family. My sister is due with her first child in March, so it is a perfect timing for Lloyd to stop hogging the spotlight. Does the possibility of seizures get me out of any diaper duty? I wonder what words I’d see there…

Thank you all for your continuing support—this whole situation, while calming down at present, isn’t going anywhere, and it is a huge help to know we have so many wonderful people in our life. We appreciate the thoughts and prayers, and we especially appreciate the ability to laugh at this whenever possible. Thank you all for caring about us. You have helped us more than you will probably ever know.

Love,

Kristina & Mark

Attached is a photo from our trip. Some of the many churches that got bombed in the blitz are now urban gardens. We found this one empty while out walking in the old city one day.

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)