Awesome Brain Surgery Scar 2011

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!

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.