"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.

Let’s Not Be Friends

Chemo and I just don’t get along.  That is the truth of the matter, at least at present (according to Dr. G), and I am done.  Two rounds of high-dose and everything seemed okay until the week before round three when I dropped to a platelet count of 67.  I realize no one especially cares what my numbers are, but for basic understanding we all should be at 150 or better.  I got a call telling me not to bend over or pick up 5lb objects until further notice.  There was a whole list I don’t remember.  Ultimately, it meant Mark had to carry in the groceries.

After a few weeks I bounced back, but the chemo is definitely over.  Dr. G says that in a few years (I love it when he says that) if I need it again I may respond completely differently to it.  Fine, I take each of these as they come.  I don’t choose to look ahead and wonder about future problems—make that possible future problems.  My MRI a couple of weeks ago showed no change. The level 3 is still gone!  Nothing is growing!  And they are certain that the small color they saw before was just dye, just as they said last time.  Things are looking good.

I am still tired / run down, and my brain doesn’t work quite the way I want it to.  Medicine changes affect my tiredness for weeks—I wasn’t prepared for how much it could do to me.  I keep hoping my spelling will come back, but it is wretched beyond belief.  I’ve been reading all along since my last surgery, but not my usual level of books.  If I read too much at a time the words would start swimming in front of me.  I kept trying, though, reading longer articles in Vanity Fair for example, and a few weeks ago I picked up the book I was reading when I went into the hospital.  I’m now reading, carefully and not every day, Brideshead Revisited.  I can’t tell you how excited I am about this.  I used to read multiple books every month, and it has been nine months since I have read a proper book.  Just writing that makes me sad.  I can’t help, in this moment, but think of all the blind kids who are denied the ability to read by not being taught Braille.  Maddening.

My hair is growing like wildfire on all but one square of my scalp and my left eyebrow has decided to give it moral support by switching to half power.  My hair was fully punk at my friend’s wedding, where I also read aloud and did not choke.  It was one of my favorite pieces ever, which might have helped.  Or perhaps it was the small church and town, surrounded by generations of my family starting in the 18^th century (we don’t move much in Delta).  Mostly I think it was knowing Mark was right there, his own copy in hand, ready to jump.

I hope everyone has a wonderful fall, as we intend to.  I’m hoping getting out of this house a little bit will shake off the last remnants of these awful drugs.  And while we’re hoping, let’s throw one in for the Orioles, too!

Love,--Kristina (& Mark)

It's "Going Around"

From this angle, I don't look bald at all!

Here is what has been happening in the three months since my last update:   Just as I got the go-ahead for chemo I got sick.  Just plain sick, a bug that was “going around” (said my Drs) and I was laid up for a month.  I couldn’t walk more than five feet without sitting down; I needed to rest between putting on separate articles of clothing; I once fell asleep between putting on socks.  When I started to get some strength back at the end of those weeks my blood counts were far too low to go on chemo.  I’ve had my blood drawn every Monday of this year (*sigh*).  

However, I have now had one round of higher-dose chemo (June 7-14), and my second one arrived today!  Will I make it to round 3?  Who knows?  I might just not be able to handle chemo.  For now, I’m working on this week and next.  These chemo pills are nasty buggers when it comes to delayed affects.

 My second post-radiation MRI was a little more messy, more like we expected to see, and harder to read.  Basically, my Lloyd-zone is now a mushy, colored area on the scan while it gets itself resituated.  It is scary while it does this, but I knew it was coming.  Mark reminds me when I forget, which I am very grateful for.  Everything is still doing what it is supposed to: things are good.

So apart from spending a month sleeping, then some recovery, I have been really well.  Mark and I went to Dallas for the National Federation of the Blind convention and I got to see a lot of my friends.  It was wonderful being there.  We have spent time with my family at The Dinner Bell Berry and Veggie Farm in Delta, PA (look them up on Facebook!)  Mostly, Mark takes home all the berries & jam he can get his hands on and my mother loves him for it.

My hair has started to come back, largely.  There is still a definite bald patch, but it is much smaller now.  One of my oldest friends is getting married in September, and I’m thinking seriously about getting that hair “added onto” before then if that is possible.  At this point, it is still a mystery.  However, my hair grows remarkably fast—I might have possibilities!

Love,--Kristina (& Mark )

P.S.  For those wondering (you know who you are), we are currently on Dove brood #4

At the end of May I shaved off the few wisps of remaining hair on my bald side and had Mark paint me a (temporary) henna tattoo. Unfortunately, it just wouldn't take on my scalp skin, but it sure was a cool design.

               

                 

               

               

Tail Kicking

My month of radiation recovery, during which I’m told many patients spend taking a vacation (against our doctors’ wishes), is now over.  And I now understand why they ask us not to go anywhere and cannot for the life of me understand why anyone would not obey—it was not a good month!  I have been a hazy/loopy, ever-worsening lump of deaf craziness.  I’ve spent my days in dreams while awake, which made sense to me, and trying to remember who I might be talking to.  My left ear deafness got much worse (I cannot hear from it at all), and my right ear is partially deaf as well.  It is maddening.    

All of this groaning is to say that it turns out I’m on a three to four week hang from the effects of what I got in treatment.  Gosh, I wonder why my radiation doctor, Dr. K, my head guy for the six weeks of treatment, didn’t make sure I had that information?  It makes me laugh to think about it.  Just as all the bad effects start to show up Dr. K gets to scoot out, I spend 4 weeks “recovering”—i.e. “suffering”—and then Dr. G gets to deal with me.  Pretty good set up, radiation staff!

I kid, of course.  That whole staff was amazing.  And do I really want to be convinced in advance of just how bad it is going to get?  (Answer: No, I do not)  Also, I was slowly weaning off of the remainder of my steroids, and that is never any fun either.  Advantages here now include sleeping fully through the night!

Now: exciting news arrived from Dr. G yesterday.  He reported on my MRI to see the results of all this hoopla and the results show, “No apparent enhancement.”  This means no level 3 chunk is there anymore.  Doesn’t it seem like it should sound like more of a big deal?  It naturally says lots of other things, but that is pretty exciting.  It says that my brain is still puffy, that Lloyd in general shrank slightly, and that I am in quite good shape.  I am kicking tail.

Next: I go back on chemo.  I am not looking forward to it, but we will get through it.  Five days on, then three weeks off; a significantly higher dose; for six months or as long as my body can withstand it.  Dr. G gave his personal advice to take anti-nausea meds on the sixth day, too.  I think I will obey.

It has been so nice outside, and I’ve been upsetting the doves (who are already on their second set of 2012 babies)  just by being in the garden so often.  I recently realized I’m better than half-bald—the bottom third of my new hairline takes a sharp turn to the right.  My ponytail is not going to win any contests.  

Things are going genuinely well, which is a funny thing to say when you can’t hear and still don’t feel terrific, but it is true!  I’m on the upswing, my treatment WORKED, and the chemo will continue to do the job.  Back in December we were minutes from a very different path—one with no chemo—and look where we are now!  I am incredibly lucky to have the doctors and staff I do, the friends and family who support me, and mostly Mark.  

I say it all the time, but I am the luckiest person I know.  

 Love,--Kristina (& Mark)

Almost Done!

Radiation is almost over.  Friday is the first day of each week for me, and St. Patrick’s Day is the first of my last half week.  March 20 is my last day:  thirty-three zaps.  I learned that things change rapidly during treatment, but overall it has still been very easy.  I never did get tired or lose my energy, and I never did go bald.  I did go half bald.  That is it—exactly half bald!   After that third week my hair has only come off in small amounts.  Mark really likes it and is in strong favor of a henna tattoo once my skin is recovered.  Which brings me to my minor complaints: my bald skin/ear has just begun to be a little irritated in the last couple of days, and I am now deaf in my left ear.  The ear is driving me crazy, but I’m told it is likely to get better after radiation ends.  I did go deaf in that ear when I had my first craniotomy in 2008 for several weeks and it returned then.

I did have to go off of chemotherapy early.  My platelets dropped thirty points two weeks in a row, but they kindly leveled out right at 102.   100 is the cutoff to stay on chemo, though 150 or above is where you want to be.  They’ve been going back up ever since (very good news), and I got a total of 4 1/2 weeks of radiation and chemo together—which is great.  I have a month off starting next Tuesday, then if my platelets are where they need to be, and my doctors don’t decide to change the plan, I’ll go back on chemo for another 4-5 months. 

I am looking forward to going off the steroids, or at least taking less of them, more than anything.  The sooner it can happen, the happier I will be.  I misspell things so badly it is outrageous.  I make Mark check anything written in pen, and spell-check is only good for so much.  I misspelled my own last name in pencil at a check-in list last week!  Online, I used “sights” for “sites.”  It seems trivial, but when you do it constantly it gets old very quickly.  I am looking forward to getting some of my spelling and reading ability back.  Very, very much.  In the meantime, there isn’t anything to do but laugh about it.  Kristina Wadea makes a lot of errors.

The Pear Trees (which I spelled Pair in an e-mail to Mark today) on our street are blooming right now—so early!  However, they are as beautiful as always.  I hope everyone is having a wonderful beginning of spring, as we are.  We intend to fling ourselves it into with even more gusto next week!

Love,--Kristina (& Mark)

Zap Zap Zap!

Today was week three of chemo and radiation—my fifteenth zap.  I am doing extremely well and am now halfway done!  Everything is going as expected, and we are thankful for that.  

I get zapped ever weekday at 8:45am, and it takes about 6 minutes to happen.  It is so ridiculously fast and easy it is almost unbelievable.  We only live about ten minutes from the hospital, I don’t have to change out of my clothes, we just walk in and scan my card and are usually back out the door within ten to fifteen minutes.  It is hard to describe how truly easy, painless, and simple it all is. 

The end of my hair-this was week two.

 

 

Dr. K told me my hair would come out around week three, and he was right.  I am truly okay with this now and not upset.  However, it is stubbornly refusing to come out anywhere but right around Lloyd proper.  The result of which is that I am now half bald.  I was working on this prior to leaving the house this morning and realized I had created a comb over as a solution!  This is clearly not going to work.  Either the right side of my head needs to catch up or the clippers are coming out.   

My platelet count dropped for two weeks, which was quite a concern, but came back up this week.  This is excellent news, as I have absolutely zero control over my platelet count and need it to stay up to be able to stay on my chemotherapy.  Speaking of which, I feel absolutely fine and am not even taking anti-nausea drugs.  The only thing the chemo drugs do to me, and this is a pretty big deal, is they prevent me from being able to drink COFFEE in the morning.  It is just awful.  I have to take them on an empty stomach two hours prior to radiation, so until 9:15 am every day I am without coffee.

I have one other major complaint, and that is my level of loopiness that comes from taking steroids.  This is simply something that is going to happen for a while, but I don’t like it.  I am operating at much different (ie: lower) levels than usual, and I am just not quite myself.  However, this is an important part of my treatment—much more than I even realized.  I learned this week that I’m supposed to take a higher dose of steroids even before I take overly regular doses of Acetaminophen (Tylenol).  It keeps my brain happy, relaxed, and calm.  As I said previously, I am obedient to whatever my doctors and nurses tell me to do—I really do whatever they tell me.  I’m no brain surgeon/nurse/radiologist…you name it.

In other news, my house is once again in amazingly fine shape.  I know where everything is, cabinets have been searched, drawers have been emptied and refilled, and unused items have been taken to Goodwill.  My kitchen has been painted.  My jewelry studio (which has been largely ignored for three years) has been emptied, fully inspected, and restocked.  The cats are starting to accept me as a daytime member of the household.

Mark and I are truly well. Things are going just as they should be, just as we want them to be.  I feel well, aside from this loopiness which will go away with a change in drugs at some point, and everything is taking the course it is supposed to take.  After the next three weeks, we have a month totally off before we start up the chemo alone.  It will be nice to enjoy the beginning of spring, which it already feels like here in Baltimore this week, with no Lloyd for a few weeks.

Love, -Kristina (&Mark)