Drugs, Drugs

My last Dr. Day was a month ago. It doesn’t feel like that long. I suppose I haven’t written because I have nothing dreadful to complain about, and lots of whining ready to spill out about lesser concerns. A month has gone by, and it isn’t getting any better…so I’m going to write what I’ve got.

Lloyd is asleep. My last appointment found me, yet again, in the hands of a soon-to-graduate medical student at Johns Hopkins for the majority of my visit. Another young man, considering entering medical school in this field, was “riding along” for the day to see how he felt about it. He looked terrified. No matter how adjusted I get to Lloyd, it occasionally comes lurching to the front of my consciousness that it is simply a dramatically bad-sounding condition. Really, we should get a prize or something. Luckily, to both his and my relief, we learned quickly that the tube report had already come in—God bless them—and was a lovely, boring paragraph. After that, Dr. G came in for a chat and we discussed our Christmas plans. It is reassuring when your Neuro-Oncologist would rather discuss travel plans than tumors.

Christmas was fun and different for us this year. We went to Steamboat Springs, CO, for a vacation. It was strange to be by ourselves on Christmas for the first time, but the trip was wonderful. I ski well enough not to embarrass myself, Mark boards like a long, fast, lazy cat surfing down the mountain. He does frequently stop to wait and say ‘hello.’ My friend Jim met us for a day on the mountain with some of his friends, and it was fun to ski for the first time with a blind guy (it should go without saying that Jim is fun, anyway). He, too, sometimes waited for me.

Since November, I have been changing one of my two anti-seizure drugs. This was a long, slow process which culminated while I was in Steamboat. A few days later, while waiting for the lift one day with Mark, I suddenly felt strange. I stepped out of line and proceeded to have the most confusing, terrifying, completely new kind of “brain event.” No picture words here—this was confusion, panic, chills racing up my left side, nausea, and an inability to articulate what was happening. About a week later, it happened again at home. This was now not a one-time fluke, so Dr. R upped my dosage and I spent 6 weeks fighting with less-intense but still utterly horrible episodes, feeling lousy, and losing my ability to read and write. Again. Much worse than ever before, in fact. “It’s a great drug—once you get used to it.” All of the brain medications say this. “Just fight through the bad part and it will be worth it.” I’ve done this before. I couldn’t do it this time.

Last Friday I reached the end of the line. Within 10 minutes of my e-mail to Dr. R telling him I could no longer perform my job, I had a response with a new drug. I’ve got a month of tapering off & onto my next trial. So far, I only take a half dose at night of the new stuff. My mind races uncontrollably and I wake up every two hours like clockwork. But no episodes since last Thursday! Please do me two favors, whoever may be reading this self-pitying BLOG of a blog:

1) Forgive me. I am having a rough patch and cannot seem to help this whining. It will pass.

2) Wish me luck on my new drug. I know this isn’t growing brain cancer, but these symptoms are bitter. Not being able to read, sleep, or remember anything? Come on.

Aside from all that? Things are great. Mark is great, our family is great. My sister’s second baby is due in May. I would really like to be able to spell his/her name when they get here :) Here’s hoping.

Love, -Kristina

Our Christmas Chickens. The owners of our condo must ADORE chickens, as, in addition to this shrine in the living room, we counted 36 other chickens throughout the house.

Lloyd is an Oddity

My first three month MRI has produced a delightfully boring result: no change. Dr. G had a medical student handle most of my oncology appointment, with him only coming in at the end for a once-over. If that doesn’t tell me where I rank on the worry scale, I don’t know what will. “Chill out until you don’t have that option,” is how I chose to interpret these reminders. As my natural inclination is to fret, the reminders are helpful.

This student, studying Radiation Oncology, was curious about my seizures—which I don’t mind discussing at all—and asked me if anyone had ever told me how very unusual my seeing words on things is. I had NOT been told that. I can’t help but laugh as I think this is why they are in training. “Don’t tell them they’re weird.” “Oh- check.”

While I am perfectly content to lie in an MRI tube, I hate and detest my motor skills testing. It is extremely simple and annoying—and I am terrified that I will get it wrong. It involves a lot of tracking fingers with my eyes, standing on one foot, etc. Mark told Dr. G how much I hated these tests recently and he kindly explained the purpose of each one as we did them. I now hate them (somewhat) less and fear them more. Should my outstretched hands part while my eyes are closed, I now know the connection between my right and left brain is possibly weakening. Great.

On this visit I had additional testing that was more specific to memory problems caused by radiation (my student’s specialty), and anti-seizure drugs. Panic swept over me as I was asked to memorize words. She took a round object out of her pocket and asked me what it was. Perhaps a minute later, mortified, I came up with “penny.” It was crushing. *sigh* However, I “passed,” and I simply have to remind myself that it isn’t my brain malfunctioning, it is just the drugs slowing me down. Stupid quality-of-life enhancing drugs messing with my quality-of-life!

Although I’m stressing the negative, there actually was a reward waiting to come from this girl’s presence. At the end of my hated tests, prior to fetching Dr. G, she did a quick recap and said that they’d probably see me again in 3 months another time or two, then bump it out to 6 months, then maybe longer. Her assumption, in other words, is that I’m going to stay stable for long periods of time. This is a refreshing thing to hear in that office. Of course we don’t know. Ever. There is a sleeping bomb in my brain, but it is sleeping. And it was cool to hear this girl blithely discuss it like, “of course it’s going to keep sleeping”—even if she never actually said that.

So, the fall check-in is complete, and I need not go back until the winter!

My mother recently told me about an experience she had telling someone about my condition (a thing she rarely does). The person was very upset and sorry for her, and she was compelled to spend the rest of the discussion explaining that I’m really doing fine, that you would never know I’m sick, that I’m working, that I’m “just like everyone else” and going about my life. I have the opposite experience. When I tell someone, surprisingly, usually the first thing they say is, “But you’re fine now, right?,” followed by “But you’re in remission, right?” and so on. The tone of voice is generally a demand. I’m put in the position of convincing people I’m sick. My mother is convincing people I’m not. She isn’t wrong, but neither am I. Friends say to me, “now that you’re better…” or “back when you were sick…” Am I well? Do I want to claim that I’m not? What am I?

I am as sick as I’ve ever been, and I am as well as I’ve ever been, since Lloyd was diagnosed in September of 2008. I have had reactions to drugs, adjustments to a new world order, and recovery from a phenomenal surgery. But my incurable brain cancer is exactly the same now as it was then. I am no better, no worse, and no different. I hope to stay this way indefinitely. As long as I do, I plan to chill out until I don’t have that option.

I am Kristina, and I love Mark. I love my family and friends, the woods, tidepools and streams, and the helplessly inept Doves that nest on our porch. I love my life.

Love, -Kristina


Nathan came to Baltimore for a rumpus with Aunt Kristina and Uncle Mark.

Big Changes from Nothing

Two Years Ago

This post brings the biggest Lloyd news, and the first real change, in almost two years. It has been two years this month since Lloyd announced his presence in my life—July 28, 2008. Or, as Mark likes to call it, the worst night of his life that I don’t even remember.

This July, though, brings a different Lloyd: a sleepy Lloyd. We found out yesterday that my MRI shows no change, that my tumor is “stable,” and that, ultimately, I have had no change since my craniotomy in August ’08— just shy of two years ago. That is a pretty amazing run of luck!!!

Dr. G has been waiting for me to get to two years of no growth, hoping I would make it. Now I’m here. There is no magic doorway to step through with cancer (once you step through, that part is over and you don’t ever have to worry about going back there again! Ha! If only…) We all strive for red-letter goals, thinking they will protect us, but the truth is they just give us hope. Hope is the most powerful tool we have, and frequently the biggest shell we've got to load into our guns. “Five Year Remission” is a big red-letter goal, for example, but I’m not in the running for that. I’m not complaining, though. There are a lot of people who would give their right arm for my two years of no growth. This brings me back to my prize…

I have been cleared to come in for MRIs every three months instead of every two months.

I’ll just give you a minute to get all excited and/or calm down. (smile) I realize this might not sound that exciting, but when you stop to consider, this is only four times a YEAR. This is only once per SEASON. I won’t go back until October! That’s Fall, Winter, Spring… you get it. And now I’ll only have to get all worked up four times a year, at the expense of possibly finding out about Lloyd’s growth only a month later than I would have otherwise. I think that is a good trade-off. And, let me remind you, it took me two years to earn this!

Duckpin Bowling—a Baltimore Tradition!

He Started Flapping

Non-Lloyd news includes a fantastic spring (I didn’t post after my last Dr. Day, so it’s been a while), with fishing, a short trip to NYC for our five year wedding anniversary, gardening, lots of reading (Catch 22, Lolita, One Flew Over the Cuckoo’s Nest, The House of Seven Gables, and, currently, Vanity Fair), and frequent visits up to the country in Pennsylvania. The NFB convention (and prep) kept me extremely busy, but was a fantastic time in Dallas. It unfortunately prevented me from joining Mark and our family in California, but he had a great time with them. We both just got back home, and last week Sansi came to town to visit and join us in the Delta Parade, representing my parent’s farm: the Dinner Bell Berry Farm.

Strawberries, Raspberries, Blueberries, and Sir Gway

It isn’t every day you get to dress up like a berry & ride through a small town on a Segway tossing candy. I have said it many times, but I have a wonderful—a joyous—life, overflowing with love, and it is because of all of you. Thank you.


Love, -Kristina

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)