Surgery Successful!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love, -Kristina

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

Lloyd is an Oddity

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

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

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

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

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

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

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

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

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

Love, -Kristina


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

Big Changes from Nothing

Two Years Ago

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

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

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

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

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

Duckpin Bowling—a Baltimore Tradition!

He Started Flapping

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

Strawberries, Raspberries, Blueberries, and Sir Gway

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


Love, -Kristina

Calm

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

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

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

Love, -Kristina

The What Before the Storm?

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

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

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

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

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

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

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

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

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

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

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

Because right now, this week, I need it.

Love, -Kristina

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

Lloyd is Attention Starved

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

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

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

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

Love,
Kristina (& Mark)

Merry Christmas to Me!!!

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

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

Love, Kristina

Lloyd is a Bit Fussy

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

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

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

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

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

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

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

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

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

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

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

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

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

Love, Kristina

Mark says, “Happy Chanukah!”

Lloyd is soooooo innocent

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

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

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

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

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

Love, Kristina (& Mark)


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