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)