The Lloyd Newsletter

Lloyd is Nothing

2012-01-31T20:57:00.005-05:00

Because the people who love me are everything, and the life I lead is the point. I am surrounded by love and support from so many people—my family, my doctors, my friends near and far. And it means so much to us as we enter our next step this week. Thursday I step back into the tube for another test round, and Friday will be my first actual radiation treatment. This time I will be taking chemotherapy pills—Temodar—along with my daily ten minute zap for six weeks. After the six weeks, I’ll have a month totally off, then start back up with just Temodar for another 5-6 months.

So—in honor of my zap and chemo, my friend Liz Makowske created the most wonderful present for me: her boys dressed at my request for Valentine’s Day. They are stunning, and so is she. The link is on Facebook, but I can’t resist stealing two (I think she will forgive me). You have to be lucky enough to know Liz to understand her love of dressing up her boys, let alone the simple love of having her in your life as a friend.

Happy Valentine’s Day, everybody!

Love,

-Kristina (&Mark)

On January 19, Kristina wrote (in response to some awesome other photos that were sent):

“I love that your children exist (in small part) for my amusement. I’m going to start putting in advance requests. For Valentine’s Day, I think white robes with gold and a bow/arrow would be appropriate—Roman style.”

On January 22, Liz wrote:

“Ummm I LOVE that you just gave me an idea/project. I have marked my calendar for Feb 3.”

Lloyd is No Surprise

2012-01-05T20:12:00.002-05:00

New Year's Day

Today I had my staples removed, 17 days after my surgery. I heal well, and it feels great to finally have the metal pins out of my scalp. We learned from Dr. L that the new piece of Lloyd is indeed a level 3 cancer. This is exactly what we expected to learn, and this proof lets us now directly attack him like the level 3 he is.

The next steps are—surprise!—another fitting of a mask to wear for my radiation schedule, which will likely be getting under way next week. Radiation will be a bit more intense since we now know that Lloyd is playing a little rougher. The main difference, though, is that I will be taking chemotherapy drugs while I undergo radiation. Bam! We are whacking this thing hard, right now. We are not waiting. I’ll take the radiation and chemo at the same time, then have a month “off”, then go back on chemo for another few months of somewhat undetermined time; probably around six months. They are resolute to keep me healthy and happy throughout, and I am obedient. No getting sick and spending my days ill—all I get to do is lose my hair and be tired during radiation. And this is going to work.

All in all, this surgery was almost shamefully easy. I was home in two days feeling normal and barely hurting. I did get a painless black right eye, and there are always mystery bruises in the oddest of places when I get home from the hospital. Still—how such an event can occur in only two days is amazing to me. A wonderful, saving mystery that is letting us treat me exactly as I need to be treated.

We are terrific, I feel great, and I am truly happy about getting this news today. These people are working with me to save my phenomenal life, and it is going awesome. The only thing “wrong” at this exact moment is that we are running low on pie…

Thank you all for your love and support—it means so much to us! I will keep the news coming.

Love, -Kristina (&Mark)

Christmas: not too bad!

Awesome Brain Surgery Scar 2011

2011-12-22T16:12:00.000-05:00

Another successful surgery-thank you Dr. L!

I spent a lot of time wondering what I would find under this mask...

I had a better expectation of how much it would hurt this time, so it didn't seem so bad. I also had no expectation of getting to sleep, so every 10 or 20 minutes was a treat. Altogether-not nearly so bad as the first time; mostly (I think) because I knew what I was getting into. And it is worth it!
Now for checking out (hopefully this afternoon), healing, and getting better. Dr. L is very happy with his biopsy, and this time I'll keep my metal staples on for two weeks while I heal.
Everything has gone just great, my pain meds are flowing (smile), and I am going home for Christmas. Thank you all for your love, concern, and support!

Merry Christmas,

Love, -Kristina (& Mark)

Surgery Successful!

2011-12-20T15:50:00.000-05:00

Mark here. Kristina came out of surgery about three hours ago and, with the exception of a headache and some cheery carolers trolling the ICU (correlation does not necessarily imply causation), she's doing well.

Our surgeon, Dr. L., informed us that he got the tumor sample he was shooting for with 95% certainty. He also encouraged me to purchase the latest iteration of The Kindle. I happily took his endorsement as a sign that he was genuinely pleased with the outcome of the surgery and Kristina's condition. He also seemed to be psyched on the Kindle's slimmer form factor and higher contrast screen.

I'm at home right now decompressing and plan to visit Kristina again this evening. She will likely be moved from the ICU to a regular ward sometime tomorrow morning. I have a good feeling that she will be home by Friday!

The Face Mask that Wasn’t to Be

2011-12-15T19:24:00.000-05:00

Tuesday was my test day in the radiation room (which is behind a metal door 4 feet wide and easily 2 feet deep). I didn’t even get much zappage, as it was just setting up. I asked if Mark could come in and take some photos of me and they were totally cool with that. They like what they do and find it interesting. Please enjoy the photos of my awesome mask here, because none of us will be seeing it again!

When I arrived yesterday, they told me Dr. K wanted to see me before treatment. Well, things like that send me into a panic. When he informed us Dr. L was joining the meeting it became clear this wasn’t a, “Good luck on your six weeks of radiation!” first day routine.

In the course of preparing the radiation treatment, new images were produced of my brain. Dr. L now believes he has an excellent chance of obtaining a small piece of the new dark spot in Lloyd to determine what kind of cells they are. This was discussed at the Monday Morning Meeting, and between my doctors throughout Tuesday and into Wednesday morning. As you can see—it came down to the wire. So—do we want to go in and find out what this thing is? YES. Without knowing whether it has changed to a level 3, we must treat it as a level 2. If it is NOT a level 3, we should treat it as a level 2. Not knowing is maddening. The only reason we didn’t operate is because we couldn’t. Now we can. Merry Christmas to me!!!

Speaking of which, guess what I’m doing next Tuesday?

This is surprising, amazing, unusual, and very good news. We are very happy about this, and I should be home by next Thursday or Friday. I know what to expect this time, and that includes my awesome scar.

I will be saying Merry Christmas again,

Love, -Kristina (& Mark)

When it is time for me to go back for radiation, they tell me I will have to be fitted for a new mask!

Prepare Battlestations

2011-12-05T17:35:00.004-05:00

Changes are underway so that the next battle can commence. That, at least, is what it feels like (and what it is helpful to tell myself when I don’t like the changes!) Last week was hard—too hard to title this after David Bowie's great "Changes." Besides—I’m an Elvis girl.

We have decided to take the route of radiation alone. This was a difficult, complex decision with multiple opinions coming from bright, bright doctors. It took a while to reach, but we are comfortable with the decision we have made. To put it even more plainly, this means that chemo is out. For now.

Radiation will be six weeks, five days a week, for 20 minutes of actual zappage a day. (I just invented that medical term) They told me to plan on being there for an hour a day and that I have to wear gowns even though it is my head. Lame. My main concern, honestly, was what I would do for 20 minutes a day in there. Forty minutes every 3 months in the MRI tube gets old. Twenty minutes every day for six weeks? My new radiation doctor, Dr. K, told me I can bring cd’s and they will play them for me. I was greatly relieved to learn that I won’t be spending 600 minutes, or 10 hours, lying around “meditating” as Mark suggested.

Last week we had an appointment to begin the process of becoming a radiation patient, and after meeting with Dr. K and signing forms, testing blood, taking photos, etc., I was outfitted with my own radiation mask. The process had to be one of the strangest experiences of my life, and that is truly saying something. It only took 10-15 minutes, but a team of people passed me through a large wide MRI tube multiple times, draped a hot wet plastic-y molding mask with holes across my face (which doesn’t allow me to open my eyes or mouth, but I can breathe) and mashed it until it fit all over. They started sticking things (dots?) to it as they continued padding it to my face, as a team, sent me back through the tube, shot me full of contrast solution through the vein in my wrist and one of them said, “Don’t worry, I know it feels like you’re peeing you pants, but you aren’t.” As my mouth was held shut by the mask, I couldn’t respond, but I will say that I appreciated being given that information. They left, I got scanned alone, they peeled the mask off, and it was over. SO weird. Mr. Mask and I will be seeing a lot more of each other.

Now the radiation department is using all of the information they took from me to create my course of treatment. I go back for my first trial run on the 13^th, which will take much longer than a usual visit. Once I have my system running, we go for our hour appt./20 minute zappage five days a week and meet with Dr. K once a week to check in. He will take care of me as things get harder.

So here is where adjustments start coming into play. I will be tired—okay. I will likely have headaches—okay, nothing new there. I will lose my hair—what?? Yes. All of it. Probably around the 3-4 week mark. It is unknown whether it will ever grow back. We are bringing the radiation in to hit Lloyd from all sides of my brain. My hair is getting creamed. I am not ashamed to admit that I am upset about this. I haven’t ever not had long hair (with the exception of a shoulder length mistake my mother made in 1^st grade). But—it has to happen. I’m allowed to be upset, but I’ll get over it. I can get a wig or wear hats or scarves or simply wear it bald —who knows what I will decide. I will cross that bridge when I get there.

Next adjustment- I have left my job. Last week was my final day working at the NFB, and I absolutely hated to leave. I miss it terribly, I think about it endlessly, and I know I can’t be there.

On the other hand—I have plenty of good. The people I worked with seem to like me as a whole, and I live close and can visit them whenever I want. Also, my radiation center is ten minutes away from my house (at Hopkins). I look cute in hats. I have three cats who will be ecstatic to take midday naps with me when I’m exhausted from radiation—a definite plus in January. Speaking of which: this is going to be over at the end of January.

Thank you all for your kind words and support. Please don’t think too little of me as I recover from last week and prepaid for next. I am ready for this, as is Mark, and I appreciate the support I get from so, so many of you. Change is tough, but so am I.

Love, -Kristina (&Mark)

Lloyd Returns

2011-11-04T16:58:00.000-04:00

Kristina & nephew Andrew at the Fair in September

Lloyd has woken up. Sad to say, he has decided to have a little stretch. My last Dr. Day was almost three weeks ago and produced almost entirely the usual results—with one tiny difference: a new, very small dot in the midst of Lloyd. Well, crud.

So now my “wait and see” phase is over. It was a nice three years, and I’m glad I had that long. Now comes the treatment portion of my cancer journey. It is as simple as that—it just took me a bit to change my way of thinking. Us—it took us some time. I speak as myself, but I always mean ‘us’—Mark and I are a team in this, and his job is harder than mine (at least in my opinion) all the time.

So we’re getting used to the new phase of the journey. In some ways, it is like finding out I have cancer all over again. In other ways I am excited to be doing something about it. My hope is to go through treatment and have another nice chunk of time (years, please) before we need to do anything again. Just go back to sleep, Lloyd. You know you want to.

Treatment is… hard. Not just the doing of it, but the deciding what to do. My doctors are some of the best in the world, and still my own tumor board is not entirely in agreement with which steps to take. The community of doctors who treat my disease is not completely on the same page, and which way do you go? Do you go on trials, or do you take the standard path? Everything has risk. Lloyd is inoperable at this point, and it feels as though no matter what we do it is a crapshoot. Welcome to cancer. Wait, haven’t I had cancer for three years?

We will figure it out together and make a decision. Radiation is a near certainty, probably six weeks; chemo is a big question we are trying to answer at this point. I won’t even get started on the other questions. Mark is pumping me full of freshly churned juice (ie: vegetables) nightly and had a flat screen installed downstairs WITH a link to the DirecTV to get me on the treadmill daily. If a person can be “saved,” Mark is going to save me. He scolded me for eating a cream cheese sandwich last week. *sigh* I didn’t even retaliate. (I did love you, cream cheese sandwiches…)

Meanwhile, we are gearing up for this battle as best we can. I have resigned from my job with the National Federation of the Blind effective at the end of November (unless treatment begins sooner). This is a great sadness, as I do love my job and my friends in the Federation. However, I am not disappearing from the Federation (or the world), I’m just not coming in to work everyday. I need to focus on kicking Lloyd around for awhile. And, apparently, doing a lot of sleeping, if anything I’ve heard about radiation is accurate. And this is my brain, after all. I do need it.

I will write more when I know more, should you want to keep in the loop. My e-mail is kristinawolf@yahoo.com

Love,

Kristina (and Mark)

Mark went as a "dandy" to the western-themed Halloween party we went to last weekend. He's ready to fight (even if he is pretty).

My Brain and I are Trying to Get Along

2011-06-07T22:03:00.000-04:00

Yesterday we watched a report about a “major discovery” in the fight against cancer. This was nice to learn, and it got me thinking about cancer. Since I’ve been getting some worried e-mails from lack of posting, I thought maybe it was time to write again. The truth is, most of the time I don’t think about cancer at all. It isn’t that I don’t have it—I very obviously do. And I am not sticking my head in the sand and pretending that I don’t—I am not that brave and/or stupid. It just happens that my cancer is taking a long, slow unpredictable nap which is very easy to ignore. Additionally, I have side effects that are far more bothersome that anything cancer has directly handed me lately. I suppose it all came from the same basket, but I am content to associate my irritations to the disease of the doctor who treats it. Dr. G= Lloyd. Dr. R= seizures. And I am so very, very tired of seizures.

We’ve been playing with my seizure drugs since November. It has been difficult. I’ve been on four different drug ventures, each requiring 4-8 weeks of slow adjustment of dosage. The brain is a terribly sensitive little petunia, and although it insists upon this gentle handling, it feels absolutely no need to treat me in kind. I simply gave up on pleasure reading for a few months. It wasn’t until late May that I was willing to try a book, but I made it through The Hairstons: An American Family in Black and White with the wind at my back, and am now thoroughly engrossed in Game of Thrones. I am not back to “normal” yet, but I am as close as I have been since last fall. I’m more hopeful than I’ve been in a long time, and of course that is a good thing.

None of this is so very sad and terrible—this isn’t illness and misery, it is simply frustration. To engage in conversation and not be able to keep up—not because I don’t have anything to say, but because I can’t come up with the words I need quickly enough—is frustrating and makes me feel uneducated and uninformed. Many people have no idea why I point and stammer, and I find myself halfway wishing for a little badge to defend myself. I’m laughing at myself as I say this, but I also get laughed at by the ice cream stand boy when I point at what I want. I memorize what I want before I order, but the least change in the routine sends it away in a puff—I didn’t pre-plan for cone or cup (because obviously I want a cone), so the whole order has turned into pointing and smiling, as all my words are gone.

I seem perfectly well, and by most accounts I am, and so my odd behavior makes me seem simple when it crops up. Those who are around me the most have experienced the sudden (but now familiar) “I need a minute” prelude from me as my language ability crumbles to pieces, then has to rebuild (usually anywhere from ten seconds to a few minutes), and some of you have even been with me when this has happened and never known it. I can’t spell anymore (you are enjoying the powers of Microsoft Word), and I often feel as though I have lost much of what I am supposed to be spending my life gaining. Is that not the point of living? To gain a rich life? I feel as though I am aging in reverse—with the knowledge that if I were to compete with my eight year old self I would rank dismally against both her spelling and IQ tests.

One the other hand: I’m here. I think of a girl I knew in high school who died of brain cancer the year after we graduated. It hit her suddenly: She didn’t go to college; she didn’t have a husband; she never left home. How can I possibly say I haven’t had a rich life, don’t continue to have one? I think of her when I know I am simply feeling sorry for myself. The truth is, I am the luckiest person I know. That is truer than I have words to make anyone believe. Just as a jumping off point, I have Mark.

That is the story of the last half-year of my brain and I trying to get along. It is a relationship that has taken more energy and focus than I would like, but it has not been at the forefront of our lives—not even remotely. Mark and I both like what we do for work, who we spend our days with, and where we live. We have spent time with family and friends on both coasts, and a new baby boy has come into the world in my sister’s house. We have been swimming, and we have been fishing. Summer is here yet again, and my life is bright and illuminating.

Love, -Kristina

Please note that I have removed a tiny yellow sock in order to enjoy the inspection of his adorable footie. I just can't resist.

Daytona Speedway

2011-03-16T16:32:00.000-04:00

My father, who would have been 65 this month, would have been over the moon to see this photo of me on the track at Daytona Speedway. Given that, and given that I've had more bad to say than good of late, I thought I'd share this awesome experience I had.

The last weekend of January was the Rolex 24 at Daytona Speedway. The National Federation of the Blind, along with Virginia Tech, has created a blind-drivable car which we unveiled on the track at Daytona that weekend. Our blind driver successfully drove over a mile and a half of track—avoiding obstacles, navigating turns, and dodging boxes that were thrown out in front of him. This photo is of Dr. Marc Maurer, President of the National Federation of the Blind, and me immediately after the successful completion of this historic event. It was a thrill to be there, for many reasons.

Love, -Kristina

The car on the track: a normal Ford Escape hybrid equipped with specially-designed nonvisual technology

Drugs, Drugs

2011-02-17T20:32:00.001-05:00

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

2010-11-09T14:01:00.006-05:00

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

2010-07-23T15:10:00.000-04:00

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

2010-04-01T19:31:00.009-04:00

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?

2010-03-29T16:04:00.014-04:00

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

2010-02-04T21:27:00.007-05:00

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!!!

2009-12-26T16:34:00.003-05:00

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

2009-12-13T21:38:00.030-05:00

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

2009-07-27T10:33:00.043-04:00

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

2009-05-07T14:14:00.008-04:00

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?

2009-03-13T08:46:00.001-04:00

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

2009-01-08T16:45:00.001-05:00

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

2008-10-13T16:44:00.000-04:00

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

2008-09-22T16:43:00.000-04:00

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

2008-09-11T16:42:00.000-04:00

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

2008-08-31T16:42:00.000-04:00

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

2008-08-28T16:38:00.000-04:00

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!

2008-08-22T16:38:00.000-04:00

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

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

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

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

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

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

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

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

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

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

Love, -Kristina (& Mark)

Lloyd the brain tumor

2008-08-14T16:37:00.000-04:00

Thursday, August 14, 2008
Subject: Short novel all about Kristina's brain

Hi, everybody. Here is a very long-winded e-mail about what is going on with my brain. Lloyd the tumor has announced himself in spectacular fashion and disrupted my life to a gigantic degree, but we are dealing with him and making progress on what steps to take to get rid of him :) I was writing this very long e-mail to one friend, and then I selfishly decided I'd copy it and send it to everybody, then I'd know I had everyone on the same page. Please forgive the length—apparently I'm in a talkative mood this morning. But you can't complain or hold it against me because I have a BRAIN TUMOR and am entitled to ANYTHING I WANT. lol.

The e-mail to my boss that I mention, about the functional MRI, I've pasted on at the end.

Thank you all so much for thinking about me and keeping me in your prayers. It is hugely comforting to know that people are rooting for me—I want to kick this thing and get it behind me. Won't I have a great story?

Love, -Kristina

The letter:

Sorry—things get hectic and I forget who I've kept posted. I'm a lot better. I'm doing stuff around the house, we go shopping (a lot, it seems. Not sure Mark was familiar with the intricacies of buying toilet paper and shampoo before all this ;), going to the movies, out to eat, etc. It is handy that the Olympics are on right now—we're getting to see a lot of them. Basically, aside from being foggy and having my head sort of ache all the time (and these stupid ribs STILL haven't totally healed), I'm okay. I don't quite feel like myself—I'm not interested in much, get tired easily, get confused, forget things, etc. That is the story on how I actually feel.

The steroid I am on to reduce the swelling in my brain (Decadron) is used as an appetite stimulant in cancer patients. It also causes violent mood swings, rage, fluid retention, and acne—among other pleasant things. So I at least know why I can't stop eating. I've put on some weight which is driving me crazy. I know it is the last thing I should be worried about, but it is hard to ignore a double chin. The mood swings and rage are much better now. There were a couple of people last week that were lucky I didn't launch myself at them (the records center lady at Mercy, specifically, should be thanking her lucky stars). I do cry very easily, which is not like me at all, but then, this is a pretty crap situation. The anti-epileptic (seizure) drug, Dilantin, is what was partially making me so out of it in the beginning, but I appear to be getting used to it now. The doctor mentioned that the other day. He said it takes a few days to come up from the fog of the Dilantin.

Now—brain. Mark's good friend from high school, Kelly Parsons, helped us get into the super-awesome neurology department at Johns Hopkins (consistently ranked as the number one hospital in the United States), which is how I got where I am. VERY lucky. All of which is to say that I know that I've got the absolute best team working on me, and I don't have to second guess any of their decisions. I already know I will do whatever they tell me, because I know they are the best. Which is a great comfort.

Dr. Lim is my neurosurgeon, and he only sees patients on Thursdays. He is very nice, and actually calls us personally. He met with us and studied the work-ups that Mercy (the hospital the ambulance took me to) did, then presented me to the Johns Hopkins Peer Review Tumor Board. He called that Monday, after meeting with them, to tell us that the board thought we should do a functional MRI and that they were also "leaning toward doing a biopsy as well." The functional MRI maps my brain function in the left temporal lobe (where my lesion/tumor is) and lets the surgeon make a more educated decision about surgery risks. That region is responsible for language, speech, and—to a degree that is difficult to measure—memory. Not motor functions. I'll forward you an e-mail I sent to my boss about the test— he is very curious about the whole thing, and you might like to hear about what sort of things I had to do.

So- that was actually how I spent my birthday. Having a functional MRI at Johns Hopkins. lol. When it was done, though, we went to Sephora (my favorite) for a birthday spree :) If you read the email to my boss, you will see that the neuro-radiologist who administered the test is "the guy" in the field, heading the board of standard-setting for the test. Again, so comforting to know I'm in the best hands.

Dr. Lim called last night to tell us that the test was being interpreted, it takes about a week— it is very complex— and that he will see us next week to discuss it. He understands that this waiting is killer, but he had told us the week before that the board thought that the functional MRI was worth doing before proceeding with anything else. The doctors yesterday referred to Lloyd (as Sansi named my mass) as a "left temporal lobe lesion" and a "tumor" interchangeably. So, I'm now calling it a tumor, for brevity as much as anything.

I am determined not to read about any of this on the Internet—I do not want to freak myself out. Dr. Lim believes that I've had this for months or years, and it just finally has announced itself. We don't know what it is, and we won't for a while. It could be a totally benign tumor that could be surgically removed. It could be a benign tumor that gets to stay because it is too risky to remove. It could be malignant, and there are a multitude of options for treatment. We just don't know, and I am trying my hardest to stay calm. Nights are bad, and Mark and I have had more than our fair share of crying. But we just keep telling ourselves that there is no use in borrowing trouble, and we try to stay chill. After all—whatever it is, it is already here. We can't wish it away. It is in there, and we are just going to have to deal with it. This IS the new normal for us, so we're working to adjust.

On the plus side, if you're going to get sick, you might as well do it in a giant and scary fashion—people are so terrified that they just fall over backwards to want to try to help you. Which is not as mean-spirited as it sounds-- for example, Mark's work has given him permission to work from home indefinitely. Not too shabby, and probably wouldn't have happened for a less scary-sounding affliction. And they are sending someone over on Friday with frozen foods they've made for us- SO sweet. At my work, people from all over the country are calling in daily to my boss to inquire about me, sending me cards and e-mails, putting me on prayer lists, and just generally pulling for me. I've been sending in little update e-mails to the staff as I have things to report, and they have really liked that—I mean, brain surgery IS interesting. They took up a collection and gave me a $200 gift card to Sephora, and there is a mystery second gift that is to arrive on Saturday. "Brain tumor" just really hits a nerve, and rightly so. Not a day (except Sunday) has gone by- literally- that a card, floral arrangement, or other treat has not showed up here. My boss has been to visit every week, and calls almost every day. If it weren't for this, I would be at BWI airport right at this minute on my way to Geneva and Berlin with him for two weeks. I am SO LUCKY to have had this seizure when I did—two weeks earlier and I would have been in a hotel room in Dallas for 9 days alone, three weeks later and I would have been in a hotel room in Geneva or Berlin for 12 days alone. Scary.

So, that is the news. Another week of cooling my heels, and realistically even longer than that before we even know what we are dealing with- I don't think we can know what it is until the biopsy. (Dr. Lim mentioned to Mark that the biopsy will be of several portions of the tumor-presuming we do the biopsy, which I think is a certainty-so I'm wondering if I'll get to keep my hair. Poor Mark- I told him he's going to end up married to a 200 pound hairless moron! ) The waiting is hard. But, Kelly- that is, Dr. Parsons- had Mark read him the initial MRI's, and he says that two things we have in our favor are that it is "non-enhanced" and "low grade". He also says that he hears our surgeon is "excellent" and that he would not be concerned about the delay. I'm not looking up these terms, I'm just taking his word for it-- they mean the risk of cancer is lower. Plus, my lumbar fluid had no malignant cells. And, even if it is cancer, it is not an automatic death sentence. People survive cancer all the time. And I am young, healthy, and have the best medical team for this condition possible. What are the odds I'd be in Baltimore when this happened? Seriously- I realize I'm a person with a brain tumor saying this, but I am such a lucky girl. In so many ways- I'm just lucky.

Love, -Kristina

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

2008-08-13T16:35:00.001-04:00

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

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

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

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

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

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

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

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

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

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

-Kristina

Road Map

2008-08-13T16:35:00.000-04:00

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

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

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

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

Love, -Kristina

Finally, a neuro-surgeon

2008-07-31T16:34:00.000-04:00

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

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

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

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

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

Love, -Kristina

Here we go...

2008-07-30T16:32:00.000-04:00

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

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

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

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

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

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

-Kristina

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