Eore and Poo Lloyd

At the Baltimore Basilica for a friend's beautiful wedding.

Last Wednesday my scan was declared “unchanged” by new resident, Dr.S, working with Dr.G. After our relief period we had a long discussion about my new spells and treatments of the previous two months. A quick doctor/patient check of remembering words, holding my hands together with my eyes closed-all my favorites!-and he was off to fetch Dr.G.

Dr.G was not with him. Yet. He had viewed my scan and pointed out a spot that he was concerned about; he thought the scan review was wrong. My spot looked bigger and now we had to think about what it might be. Dr.S pulled up my brain scan on the computer for a comparison. Several possible reasons were suggested that could produce the colors we were seeing.

Then Dr.G arrived. “So you heard?” I really like Dr.G, but he has the bedside manner of Eore. He told us the board would review my case on Monday and give us options. This is not the news you want to hear. Walking out the door I reflected on the two readings and said to Mark, “That’s not the same at all.”

Five long days later Dr.S called. The board was split 50/50 on immediate treatment vs. wait a month and re-scan. (I was in a different, stronger scanner for the first time last week) Questions and answers were abundant. It is widely believed that waiting a month won’t make any difference to starting treatment. Waiting a month and getting another scan gives more information, and possibly puts me on that schedule if there isn’t any change. I’m choosing to have more information, and I also know that this is what Dr.G chose in his vote.

Spring 2012, when I lost exactly 1/2 of my hair.

I was using my site to look up a date and found that three years ago I was in the same situation, almost to the day. It had been three years of good health since my surgery in 2008, I was leaving my job at the end of the month, and I had my second brain surgery just before Christmas.  Maybe I’m starting a trend? Every three years I do this? I can live with that. Truly- it would be worth it! Everything-and everyone-I have is so wonderful I would go through it as often as needed!

With Love, 

-Kristina (&Mark)

Beautiful day

Lloyd Can't Read Update

At my EEG on Friday my technician recognized me immediately; he was the same I had several years ago! That always feels good. The EEG is 70% attaching/removing sticky cords to your head while chatting and 30% lying still trying to sleep. My results were analyzed and sent to Dr. R on Monday, and I received a call late Monday night.

I had several seizures during the test, without knowing it, and so the mystery is solved. Dr. R was not the least bit rattled by my catalog of things I can't do right now (which I LOVE about him), but went straight to work thinking up what drug to add to my list to get me under control. If anyone wants a job writing new drug names, surely there is a market for that. My new drug sounds like Wombat. Almost every drug I take has a well-known faux name among it's users (Dope-O-Max, anyone?).

Hopefully this issue is solved. At the end of the month I see Dr. G for a follow up to make sure nothing is growing. In the meantime, I'm feeling good and thank-you so much to everyone who wished me (wishes!) me well! I really appreciate it ❤️

Love,
Kristina (&Mark)

Lloyd Can't Read

Almost three weeks ago I was working on some jewelry when I had a long, vivid memory of a dream. Maybe 45 min. later I recalled a different, equally vivid and intense dream. By the 4th or 5th dream recall I realized something was wrong. I wasn't "remembering dreams," I was creating them.

Naturally, this would happen on a Saturday. On the plus side, Mark was home. It became much worse once I realized what was happening and sort of panicked (ie 10+ an hour). I wrote my doctors on Sunday and, to his everlasting glory, my Dr. R wrote me back. On a Sunday.

Two weeks of calm-down-brain drugs fixed my fake dreams. This last event has left me with (among other things): occasional flickering words on places where there are none, a vastly reduced ability to read, and a very wavering ability to write. Just the other night we were watching a show and I was using a device on our TV to look up an actor. I pointed to 'Bamab' on the screen and said "Does that spell 'Jeremy'?" We both had to just laugh.

After reporting my reduced state to Dr. R he set me up for an EEG at Hopkins. I go tomorrow. This should show what is happening in my unhappy head and how best to treat it with medicine. I'm on the highest doses of my current medications, so clearly we need to find something new.

I am thrilled to be under the care of smart, supportive doctors who respond to my needs. I am blessed to be surrounded by people who love me. I feel confident that this can be fixed. And I'm going to post this newsletter right after the love of my life checks my spelling for me- lol!

Love, 
Kristina (&Mark)

I struggled through this great comic book yesterday

 

The Long Summer

Lloyd is rattling just a smidge. Maybe. My appointment at Johns Hopkins on Wednesday showed a small new spot.  I will go back in two months and find out if it was just a bad look (we hope and Dr. G suspects) or something worth worrying about. I'm trying not to start early.

Other than my MRI, brain things seem very much the same. Don't believe me if I tell you the color of something; I'm wrong most of the time. Spelling is similar but more easily fixed with my omnipresent iPhone. 

Similar to spelling is temporary word loss (no doubt there is a fancy name for this). I lose my words frequently and replace them however I can. Example: I want to say "breakfast cereal" but can only achieve "crunchy milk brown box." Mark often does the shopping and I will send him a picture note of the scribbled grocery list we keep on the refrigerator door. My spelling/words are so bad that I started correcting the list before sending the photo. Mark immediately noticed that I was doing this and asked that I stop; he likes my crazy words and thinks its fun to figure out what I've asked for.

I recently read Dune for the first time and now I'm rereading The Scarlet Letter. I'm selling handmade jewelry on Etsy (www.etsy.com/shop/AglaiaDesign) as opposed to starting my own sight again. It is a hobby I enjoy, and I believe getting my hands dirty and keeping my mind occupied is good for me.

Mark has been outrageously busy with his work all summer. We are looking forward to the fall season when, hopefully, one of his major projects will conclude. The cats have been delighted to have us home every weekend.

Fall is my favorite season. I'm surrounded by so many good things, so much beauty, so many people I love and who love me. I hope everyone reading this has a wonderful season!  

Love, 

Kristina (&Mark)

August birthday girl. My grandparents always took my sister and I to our favorite restaurant.
(Delta locals: it was Willow Valley, Lancaster, and we loooved it!)

(Still) Sleeping Lloyd

The best Lloyd is the most boring, and that is why I find it so hard to write.  I’m still unchanged.  I hate to keep saying it, always afraid I’ll doom myself.  At the moment, I am on a three month check-in regimen again.  It’s fantastic.

We’re taking a short vacation to an island to look at the sea critters.  I’m dabbling in jewelry making again, selling through a little site on Etsy.  We’re both recovering from the flu despite having had our proper shots, separately and months apart.  Kitty gets mad and leaves the room when we cough.  

I’m happy as can be, looking out my window at Doves, Cardinals, and Goldfinches feeding in my back yard.  I wish you all a wonderful spring.

Love,

Kristina (&Mark)

This popped up from a friend this week; My parents and I in 1977.

"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.