What's That Guy's Name Again?

It has been two "Dr. Days" since I’ve written. December was so great that anything else was hard to live up to.

So, as stated, I’ve had two Dr. Days this year--January 28 and last Wednesday, March 25. Neither showed signs of real change. This is terrific. The longer I can go without needing to do/try/test anything, the better. I truly believe there will be an end to this, though I don’t know when it will be. Right now I’m healthy and well. I even dodged the flu! (Fingers crossed ;)

My reading ability is just… annoying. As I write this little piece I’m okay- by which I mean this particular 20 minutes?  One hour?  All day?  “Ha Hah!!” says Lloyd, “I take your reading ability away suddenly whenever I feel like it for no reason whatsoever!!! No warning, just poof!”  Then there are colors.  I got smart enough to make myself a big color reference sheet I can pull up on my desktop. A lot of my Etsy jewelry (www.etsy.com/shop/SimpleSilverByAglaia) has color emphasis and I have to check myself on everything I write. 

Naming of people is also on this list. For most relatives I have the ability to look things up (Ancestry.com).  I am a dream to watch movies and television with! I want to know who someone is, so I describe the last 3-5 things they have been in to Mark. He is remarkably good (and patient) at it.  

My family is fantastic, Mark is wonderful. My sister’s family is raising chickens at the farm for eggs, and has almost more than they can eat. My parents have been wildly successful with their berry farm, but will probably end the amount of production after this year. Mark and I have a couple of trips planned in the near future, including out to California.

Today is a sunny spring day, there are beautiful little clouds passing by. My yard is full of birds that I like to watch (I feed them too much. I admit it.) I lead a wonderful life, and Spring is here.

Love, 

Kristina (&Mark)

Mark donated his time to working with a great school in Baltimore this year. Why wouldn't they want to put my wonderful, handsome husband's photo on their website?

 

Happiest Christmas

My cancer has not changed. Lloyd has not grown. This 50/50 month we chose to wait out—this terrible, “was this the right choice?”, battening down (again) month—is over, and we chose correctly. From now on, all of my MRIs will be in the highest level scanners.

This last month was difficult. The hospital called to set up an appointment with the Radiation department on my return visit. This didn’t spark confidence. As it turned out, though, my radiologist (who I’ve known since 2008) didn’t think I’d need him. He was right.

The relief of not starting the engine of “braincancer, battle-mode!” when I was just on the cusp is difficult to describe. It is difficult to absorb. I’m so grateful. For now, as it stands, I have two months before I have to go back. I have the entire Christmas season!

Thank you everyone for your thoughts and well-wishes! Thank you for your notes and blessings, your words of encouragement for myself, Mark, and my family. It really does mean a lot, to all of us. Have a wonderful Holiday!

Love and Thanks,

-Kristina

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 :)