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.