The Zappity Zap Summer

I have finished my radiation treatment and am recovering well. Five weeks of daily “zaps,” as I like to call it, and I’m now just taking it easy while it finishes going though me. My recovery time leaves me a bit tired, and my left ear is determined to lose all of its skin. So easy to pick at… must control self ❤ This time my hair took a different twist—I went bald underneath! Side-to-side, just above my ears, there is a blank spot going around the old’ noggin. This is just plain funny! Next week I will have another MRI and see how things looks.

I will skip my complaints on reading/color/etc. and simply tell you that everything is much, much worse. I’m easily an hour into writing this, as the machine can’t even figure me out. 

Mark is great—he got to visit the Wadia family last month. Very sorry that I wasn’t able to go. My family is great, too, and we see them often. All our friends are terrific.

Profoundly considering a new home and mushroom

We have been searching for a new home for several months, viewing many places in Pennsylvania. If any of them had been “the one,” we might already be there. However, it just never felt quite right. We’ve chosen instead the northern outskirts of Baltimore. We start our moving next week. Hooray!

And on that note, things are great! I’m recovering, we start our move (which we have a month and a half to do), and I’ll be 40 this week. It’s about time—I’m one of those people who turned 70 when she was 16. This doesn’t bother me a bit. Keep them coning, please!

Love, 

Kristina (&Mark)

Out to a lovely dinner with good friends❤

Up For A Fight

My hidden bald spot. Soon to grow larger! ;)

I feel as though I may have given a wrong impression in my last newsletter. Lloyd is not winning. I am not moving to Pennsylvania to settle in for my final year. We are simply preparing to kick Lloyd’s ass, again, in a new location. 

My tumor has not suddenly turned dark. We look at it every two months and this time at the bottom there is a small growth. It is, unfortunately, in a spot too far down to surgically remove. Therefore, we are attacking it in other ways.

And so we commence! Yesterday I was at Hopkins getting my new plastic face mask for the zapper. I will receive five weeks of radiation on my left side, just a few minutes a day, five days a week. I did the same thing at the beginning of 2012. 

I’ll also be taking chemo pills; at home, five days, one week per month. This won’t make me sick, but I remember after a few weeks last time things started tasting funny. By which, of course, I mean “bad.” I couldn’t drink coffee for months. Coffee!!! *Fingers crossed* it won’t be the same this time. 

Our plan to move to Pennsylvania is still on, but we aren’t going quite yet. Being 15 minutes away from JHU for the next five weeks of daily zaps is obviously the right choice. After that, we will head up to the Delta area to be near my parents and sister. We will only be an hour from Hopkins and Baltimore.  (My father, Tim, drove to work from Delta to downtown every day ❤️) 

I will be beat-up and tired when I move, and having my family around me will help (both me AND Mark!) But that doesn’t mean I’m done, or think I’m done! Not at all!!! I am doing all of this to get better, and I will. I know it, and I feel it. I know I am not done. It is going to be a rough few months, but it will be worth it. It always is.

Love, -Kristina (&Mark) 

Head holder for radiation (zapper) 2012; sent home as a gift

Lloyd Has Woken Up

Not only has Lloyd woken up from his long sleep, but he is being a serious jerk. My scan last week showed growth along the bottom edge. This means that opening my head up for another removal isn’t an option this time—it’s too far in/down. Right now we are discussing with the doctors how to proceed. It is likely that I will take chemo for two months, see how I react, and then decide whether to try to keep me on for an entire year.  Another option might be a second round of radiation. We have an appointment with Dr. K next week to see what he thinks.

In the midst of all this, we are making some other changes. We are moving closer to my family, just north of where we now are, up in Peach Bottom, PA. None of this means I’m throwing in the towel, it just means that I want to be around my family when I feel like crud this time. Mark needs a hand, and it will be better to have a group in place. Also, my parents have a pool ;)

Mark and I have many friends and loved ones spread around the country. We don’t feel like we’ve lost any of you. Or, for that matter, will lose anyone by moving (for the 27th time). We will have a home to invite friends to, and the strength and support we feel we need.

I will be writing again when we know more about stupid Lloyd and the direction we take.

Love, 

Kristina (&Mark)

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