Kristina has passed

All,
It is with great sadness that I must tell you that Kristina died this morning. She went peacefully and I was by her side the entire time. Her family came to the house soon after and we tearfully said our goodbyes with the knowledge that it was better for her to go rather than further endure her complications from brain cancer. I and her family will miss her more than words can express.

In the coming days we will be making arrangements for her memorial service. I'll let everyone know dates and details when I have them.
Love,
Mark

Kristina Is In Her Last Days

The nurse from our hospice program informed us that Kristina likely has less than 48 hours left. I and her family are unspeakably sad about this but at the same time we know she must move on. She is still comfortable and surrounded by love. For this I am very grateful.

Update On Kristina

Kristina is in much the same condition as a week ago. She is very comfortable and is surrounded by her loved ones. - Mark

Contribute Memories and Photos of Kristina on Our "Loving Kristina" Blog

In addition to Kristina's slideshow, I've also created a new blog where friends and family can post memories and photos of Kristina. I've okay'd a list of people from Kristina's The Lloyd Newsletter mailing list to post to this blog. All you need is a Blogger/Google account. If you aren't able to post, let me know through the comments or email me and I'll add you to the list.

Visit the Loving Kristina blog...

Kristina's Slide Show

I've created a slideshow with pictures of Kristina on my One Drive account. I've given her friends permissions to add photos. If you need permissions or would just like me to post the images and captions for you just let me know in the comments or email me. - Mark

Visit the slideshow...
(click on any picture to begin slideshow and see captions)

Kristina's Condition Worsenning

Mark here again...

I wanted to let all of Kristina’s friends and family know that her health has declined significantly. In late February Kristina began experiencing symptoms of swelling in her brain. She was admitted to Johns Hopkins hospital. Shortly into her stay she took a sudden turn for the worse from which she has not recovered.

Kristina is currently at home with me under home hospice care. The doctors and nurses don’t know how much time she has left but it’s generally discussed in terms of weeks. She is not in any pain and has been kept very comfortable but is not conscious most of the time. When she does come too it is only for few seconds and she’s minimally responsive. We’re sure that she still hears our voices so we’re talking to her regularly and surround her with love. She is also still able to give me kisses. I cherish every one.

Coping with the feelings of sadness and loss has been difficult but we were all given a hint on how to handle things by Kristina herself. When in the hospital some of us had difficult moment and began crying. Kristina woke up, looked at us and rolled her eyes as if to say, "Come on guys, this is silly." So rather than spending our time crying around Kristina we've been spending it talking about current goings ons and about our memories we share with her.

A friend is helping me set up a site where pictures, wishes and memories can be shared. I'll send out another email when it's ready to use.

Thank you all for the friendship and love you have given to Kristina over the years. I am very thankful for it and I know she is too.

-Mark

I'm Back

I am home and happy! Last Thursday, after 2 weeks, my fantastic surgeon showed us images of the area resected and he got a good deal of the tumor tissue, much of which had been killed by the radiation. This is wonderful! I thank EVERYONE for thinking of me and wishing us well!!!

Now I'll tell you about the last two weeks- hard! Lol! So many drugs, got a horrible rash everywhere. And my face has turned round and puffy! I sleep 3-4 hours/night. AND: several nights ago I suddenly lost my ability to speak. Truly! I used my hands as best I could, and Mark is fantastic. The day after I was put back on some anti-inflamatory medicine. I can now talk again and I'm improving daily.

I say these things, but I am well overall. The bulk of the tumor has been taken away, again, since 2008! I am so happy and taking things easy, recovering. I thank you for your thoughts and support! I feel good and thanks to my doctors I am going strong!!! ❤️❤️❤️

Love, Kristina (&Mark)

Kristina Is Out Of Surgery

Mark here. Kristina came out of surgery at around 5:30pm today and she's doing well. She's awake and speaking but in need of some rest.

Our surgeon, Dr. L., informed us that he debulked the tumor successfully. Next we wait for the pathology of what he removed to find out if most of the swelling had to do with her radiation over the summer or new tumor tissue. Due to the quick abatement of her speech problems with the steroids, we're hoping it's the former.

I'm at home right now decompressing and plan to visit Kristina first thing in the morning. She will likely be moved from the neuro critical care unit to a step-down ward at that time as well. I have a good feeling that she will be home by Friday!

Lloyd is Ready For Round Three

I felt so well though the Fall, but then some things changed dramatically. Close to Christmas, my new inability-to-speak came dramatically. Some medicine changes have helped (the kind I hate, "Decadrama"). This week was another MRI of my brain and a visit with Dr. L, one of my favorite doctors who has operated on me twice before. I look forward to seeing him yet again on Tuesday to be operated on for a third time.

I am not afraid of this. This is something I feel that I need so much and I have an excellent team in place. Mark feels as I do. Thank you all for thinking of us. We will let you know more after Tuesday of next week.

With love,

Kristina and Mark ♥

Fall is Delightful

Fall has very stridently taken over our world here, and the wildlife stalls my typing. Our new home has a large surrounding yard that is all ours, something we've never had before! We also have a bunny who isn't really afraid of us. She likes to roll onto her back so her tummy catches sunshine during naps.

Moving on to me, I'm doing pretty darn well. I had my second post-radiation MRI two weeks ago and my brain still looks like mush. That is because everything is still calming down inside- the same system of zap, wait, check later happened three years ago. This is NOT BAD. Everything in my head is big and puffy from zaps, but it will get better with time. My head doesn't hurt so I am not even on steroids this time.

Dr. G ran me through a couple of the usual tests but really just wanted to see how my brain felt. I'm doing a little better, surprisingly! I won't throw my list at you, but some things have improved. I don't have to go back until the first week of 2016! Whoop!

Mark read aloud for us, "The Martian." My mother and sister discovered Belvedere Square Market with me on a visit. Now Mark and I cannot stay away! We'll be traveling to Boston for Thanksgiving with family and friends. And I've finally unpacked my jewelry making equipment. It's been a long time. Oh!  I nearly forgot to tell you that some of my hair is growing back :)

In the time it took for me to write this, the bird bowl is emptied. The cardinals and doves are on the ground picking up the droppings. I feel good. I feel better than normal, because I lead a exceptionally good life. May we all have a wonderful season.

Love, Kristina (&Mark)

       

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