"Helloooo Nurse!"

I wish my house looked like this. Thank you Vanessa and Kelly for the photo!

There was a cartoon show in the late 90s called Animaniacs, produced by Steven Spielberg, which had a great cast, lots of singing, and very adult humor worked in.  I loved it.  If you know the show you are probably already singing “Pinky and the Brain” to yourself.

Yesterday I was entubed (my word) with a new, bonus item.  Part of my usual brain scan involved an extra six minutes of opening my eyes and staring at a "fixed spot" of my choice on the surface in front of me: without blinking.  The person who gave me this impossible task rolled their eyes when delivering it.  Here is why:  1) my face is in a cocooned white crate inside a very thin white tunnel. 2) That tunnel is so close to my face that I can’t even focus on the tiny blue line that runs up the center without it splitting widely in two, let alone on a single dot of it. 3) Obviously, no one is going to stare for six minutes without blinking.  I should probably take that back (challengers sitting there with your eyes open...)

At my check-in with the doctors I met a new guy who liked testing me (they all do).  I thought I really rocked the color cards test for a change, one of my worst categories these days.  Turns out I got it half wrong.  I can NOT be trusted!!  Colors and names are about the worst for me.  I will say blue is yellow and orange is pink like nobody’s business.  Thank goodness Mark isn’t colorblind so he can tell me the correct words when I need them. 

My scan showed no change again!  I am so thankful.  We have been busy, busy beavers for the past few months.  At this time and in this season it is wonderful to let the worry drain out and enjoy all the blessings that are around me.  I have so, so many and the people reading this are a huge part of that!

Love, -Kristina (&Mark)

We have many trees and so many kinds of birds! This was a huge group of Mourning Doves all wanting to eat from the same tree that was dropping shells behind the house this week.  I am the dorkiest birdwatcher you could want to meet, book and goggles at the ready.

Our favorite breakfast spot, steps away! It looks a lot like Del Mar from this angle :)

The Move

I am well!  I have had two appointments and written twice.  Three months ago I wrote a newsletter and in the two minutes between Mark proofing it and my hitting “send” we got a call saying our house sale was dead.  I did not feel inclined to send my letter, or to re-write it; I was busy being irritated.

My doctor’s appointment in the early summer was good, despite being in the midst of a lot of chaos.  We did a lot of manual labor to prepare our very old home for sale, and the work was good for me.  When the sale ended we decided to rent (our original choice) instead of go back on the market. This seemed to take even more work!  I think I’m in better shape than I’ve been in a long time.  The stress of the summer worried me, and Dr. G has me back on an almost 3 month stretch.  However, all was well last week and they commented on how very healthy I seemed. 

Now we have moved ourselves into new digs slightly north of downtown with lots of walking space and trees, trees, trees.  Mark’s drive time to work is ridiculously similar despite the 1 ½ vs. 6 mile difference. Ah, Baltimore.

We are finally UNpacking for the first time in months—and it feels great.  It is nice to feel settled and in your “own” place, as any kitty will tell you; wherever that may be.   

Love,

Kristina (&Mark)

Lloyd in Limbo

The Lloyd Newsletter has been in a state of limbo.  It has been for a long time.  When I am unwell it seems to make a lot more sense; it serves as a way to pass the word to those who care about me.  When I am doing well I sometimes feel like I’m just talking about myself.  I’m not asking for a thumbs-up, I’m simply explaining that I feel like a braying ass when it seems as though I have no important information to provide. 

It would be easy to only write when things are bad (and I have been incredibly well treated and downright lucky).  In my years so far things haven’t been bad very often, so that would be the easiest thing to do.  But… this sight gets a lot of hits.  From people all over the world.  I have no idea who they are.  I can only imagine that they are new to this miserable condition (or have a loved one or friend) and have no idea what they are getting into.  We certainly didn’t.  People regularly ask to forward my blog to someone they know who has been newly diagnosed.  And to see that I’m still here- living and loving life -how can I simply disappear? They will think I died!  I suppose I feel the same way about this as I do my life:  I’m certainly not just going to leave!

So what to do?  Ten minutes of thought has produced the following: no more e-mail distribution.  That will make me feel like less of an ass.  Anyone who wants to know what is happening with me can look me up anytime they like on this website, which is http://www.thelloydnewsletter.blogspot.com/.  I’ll post a link on Facebook to say when there is a new one, but otherwise just check in whenever.  I get an MRI every 2 months and I’ll try to be more on-time with writing about those.  Incidentally, my last was on May 2 and Dr. G only came in at the end to say ‘hi’ after a totally no-change scan.

Agh...this has been troubling me, and I finally feel better.  I’ll end it with something I wrote very quickly above:

I suppose I feel the same way about this as I do my life:
I’m certainly not just going to leave!

Love, -Kristina (&Mark)

Uncle Mark swinging his nephew "into the sky" on our family farm.

Cancer Vacation

Another short, worried stretch of “what is Lloyd up to” has produced the answer we love to hear: nothing.  Since a month before Christmas we have been in battle-station mode, and, as of yesterday, we are back to “never-mind.”  I need not go back for two months—which, at the moment, feels like a real treat. 

Great Camanoe Island

Dr. G. has advised me to take vacations.  Truly.  You could think of a lot of reasons why my brain cancer specialist would want me to go enjoy the world, but I’m focusing only on the positive ones.  He’s been encouraging us to go on trips ever since we first met him, and he liked the photos we sent him from the islands last month (they always ask for pictures and postcards).  Maybe it’s just being outside, walking, having something to look forward to, being excited and positive… I don’t know.  Regardless, it will be remarkably better than what I did LAST spring.   

Where should we go first? Well, I know where I haven’t been in years, where the waves are crashing at the beach just below our windows, and we still have a few friends.  The problem is: What do we do with the cats?  ;)

Love, Kristina (& Mark)

I'll be following with my book and hat.

Lloyd the Leech

The fall went quickly, and I got better.  Going off some drugs did me well and there was nothing to report. “No changes” are always great, but sometimes I feel like I’ve got nothing to report so I wait an extra scan before I write: talk about asking for trouble!  Two weeks before Christmas my scan showed a new change.  The team reviewed it the following week and decided to scan it again in 4 weeks.  This is not something I’m sending out during the holidays, friends. 

When we went last week, both Mark and I felt prepared for treatment plans.  When my scan showed no change we were shocked.   Dr. G had left us both with the impression that another round of treatment was about to be started, but Lloyd the Leech (Level 3, round 2) is apparently just hanging out doing nothing.  Let’s hope he stays happily in place with his level 2 buddies sleeping all around.  

I get to decide when to go back, sometime between 4 and 8 weeks.  I believe Dr. G thought it would be good for me to choose.  First, though, we’re going to the British Virgin Islands this week for a few days of relaxing with family, and there are very few things I like as well as snorkeling.            

     

We were invited to the Walters Gala.

My brain workings have held firm and I am delighted to say that I have used it to read and read. I’ve finished several books on my “Hundred Greatest Books” list, which contains 124 books.  I’m currently reading, “The Bell Jar.”  I’ve also got my family tree so far back (descendants from 800 AD) that I had to uproot the whole mechanism and I’m using three different programs to try to sort it all out again.  I know how silly that sounds if you don’t like ancestry, but for those of us who do it’s a laugh riot.

  This years theme was Elvis.

Things here are great.  I am well, Mark is well, and we are happy.  I feel better than I have in a year, and I’m looking forward to staying that way.  I know that finding a way to live with this is simply a matter of time, and I hope very much to be one of the lucky ones at the threshold of turning this disease around.  It is already happening. 

Cancer recovery leaves doctors dumbfounded

A woman who was diagnosed with one of the deadliest cancers in her mid-20s now has no trace of the disease left, a recovery that has left doctors dumbfounded. Heather Knies of Phoenix was diagnosed with two brain tumors by the age of 26, and told that one—an aggressive stage 4 glioblastoma—would likely kill her within months. But Knies was recently given the all-clear after six years of intense treatment. “Her survival is remarkable,” said surgeon Dr. Robert Spetlzer. Knies even gave birth to a baby daughter last year, despite undergoing radiotherapy that often leaves women infertile.   Link to the article 

Love,

-Kristina (&Mark)

Mark won J.J. Hardy's bat.