The Results Are In

In which our Heroine feels a Palpable Relief.

Apparently, seizures are a fairly normal phenomenon in the neurological world—mundane enough when combined with a clean MRI, anyway.  Yes, that’s right.  After once again going through a total freak-out session before getting the results of my tests back (I’m beginning to see a pattern here), I have been given a clean(ish) bill of health.  I will go back to the doctor in six months (not three!).  My MRI scans are good.  Also, my medical history indicates that I am not really that prone to seizures.  This fact, combined with my forgetfulness at taking my medication on time, etc… means that I don’t even have to change my medication right now.  HOWEVER, if I have another seizure in the next 6 months of any kind, then I will call my doc immediately and increase my Keppra dosage.  But if I don’t, then I may be able to go completely off of any anti-convulsants in six months!  Please do keep your fingers crossed on my behalf! 

The relief, as stated above, is palpable.  And I have hope—which is such a good thing.  The only thing I’m wondering now is how I’ll really be if/when I go completely off brain-altering drugs.  You think I jest.  Because really, there aren’t many excuses left for me at that point.  Here’s a snapshot of my life in six months:

Memory? Present and accounted for, if I remember correctly. 

Personality issues? Functioning well.  You be the judge.  

Forgetfulness? I am like the proverbial elephant.

Fatigue? Must be based on other reasons entirely.

Lack of coordination? Did I ever really have a hope with this?

Fine motor skills? Good penmanship is overvalued by third grade teachers everywhere.

General weakness in limbs? Opening jars is severely overrated.

 Confused? Who isn’t, these days? 

Upset stomach from taking Keppra without food?  Gone, hopefully.  And the sooner, the better. 

Fifth Time's a Charm?

In which our Heroine gets her Fifth MRI. 

MRI: check.  Finished for this round. 

That’s really all I have to say.  I did it, and now I wait until tomorrow.  Random details are as follows:  The MRI tech remembered me from last time.  Also, I haven’t had any problems with claustrophobia before, so I didn’t bother to even tell them that it might be a problem this time.  Guess what, I think they have a bigger machine for claustrophobic people, and the rest of us get the skinny little tube.  I still did all right though (as long as I don’t have anything wrapped around my limbs I tend to be fine).  And that really is all.

I don’t have the emotional capacity tonight to write more.  I just need to go watch a movie or read a mindless book.  I think its best to pretend I don’t have a brain right now.

Gypsy Season

In which Springtime seduces our Lady. 

Dear Diary,

Here in Anchorage it feels like the heart of winter, and yet some mysterious biological clockwork inside of me claims it to be spring.  This week I have organized various parts of my house carefully into various Sterilite/Rubbermaid boxes.  Anything from batteries to lightbulbs, canned goods to art supplies, has found itself fitted snuggly into a new home.  I also have piles of items set aside for donation to Value Village.  Since moving into our house last year I’ve had no time to put things in order, and I found out the hard way that my physical state of disrepair was made much worse by the disreputable state of my house.  It is terribly frustrating to lose certain books or art supplies in a nearby room and not have the energy to search them out.  And so I am now driven to extreme house makeover, expending more energy than I really have into this mundane task. 

Besides this curiously overwhelming urge to organize, I have lately been fantasizing about gardening.  My brother Todd has drawn up a detailed plan of how my yard should look after several thousand dollars and ten years of work.  It is good of him, but meanwhile I keep my gaze firmly locked on hanging baskets and perhaps a few more houseplants.  I long for warm sun and growing things.  I have seeds already picked out, and nowhere yet to put them.  Story of my life: I make plans, and have no way to make them happen.

I am a flurry of activity whenever I find the energy to put toward it.  I am excited about spring.  Right now this is where most of my creative energy is going.  I’d like to tell you that I am 100% sure that a healthy and green spring full of health and vitality is just around the corner.  Unfortunately, an inexplicably chill breath of winter stirs in my heart as I wonder what the results of my MRI will be tomorrow.  It is very possible that all of my hard organizational work will have been done in the service of a sick and frustrated me rather than a biking, hiking, jogging me. 

In conclusion, I am really dealing much better with this round of uncertainty.  The last bit of MRI-stress nearly took me over the edge—it being the first time I had to face my future by 3-month segment.  But I could really use some fortune-telling gypsies camping out in a nearby copse of wood ready and willing to give me just a hint about what this next season will bring.   

Enduring to the End

In which our Lady endures. 

Late Tuesday night I made a grave mistake.  I popped in the CD containing my MRI images.  I was curious to see the latest news.  Unfortunately, I don’t know how to decipher the scans.  I was hoping to see a nice big black hole where my tumor had been and nothing more.  Much to my despair, I instead found cloudy white stuff all over the area.  Here are the images from my last two MRI’s: The first shows how ravaged my skull and how swollen my brain were right after the surgery, the second show Tuesday’s results: 

In my small experience, the lighter stuff usually either indicates bones or cancer, while the grey is my normal beautiful brain.  I know nothing for certain, but I have a lot of anxiety.  I hope it is useless anxiety, but I won’t be sure for another week.  Unfortunately, I have been experiencing a feeling of increased pressure and the occasional headache more often the past few weeks.  Is this from stress, or from cancer?  Whatever the case, it is easy to believe the worst.  With all of this uncertainty I find that all I can do is hope and then put into practice a particular kind of endurance. 

I begin to hate the phrase enduring to the end.  In LDS church and culture, it is used all the time.  It is this notion of fighting the ‘good fight’ until its all completely over and you’ve gained your heavenly reward.  It has a sense of heroism and nobility about it, though it is often used casually.  While growing up, I would envision the Mormon pioneers slowing making their way west in wagon trains, enduring as they walked and walked and walked all the way to the Great Salt Lake.  Of course, back then I idealistically believed that when they reached Utah the endurance was over and they found good times all around.  Never mind the years of hunger and toil that awaited them there. 

So here’s my thing.  This last week I’ve thought a lot about my current struggles—and they are just that—current.  I’m so tired of it NOT ending.  I never was one for distance running.  I much prefer dashing through the race in 100 meters.  Even before the MRI on Tuesday, I have had this sinking feeling that I’m not quite done yet with this cancer thing.  In fact, I look back on earlier blog posts and on the improbable optimism of the last few months and the terminology that comes to mind is “naively jubilant.” It all started with the revelation through my patriarchal blessing that I would “live a long and prosperous life.”  I do not doubt that this will be true.  But the naivety with which I assumed easier, even golden, times ahead (and ones that would soon cease) makes me cringe.  That is not what was promised in those few words. 

I face a new ME right now—one who is being changed, probably for the better, but not with my own volition.  I am losing aspects of myself that I prize due to the cancer and the surgery: my excellent short term memory, my quickness in conversation, my ability to throw things together successfully via energy, charisma, vitality, and a certain bit of good fortune.  In place I am getting other things, and they are good—but sometimes surprising.  For instance, some of these aspects may be increased spirituality, wisdom, or the dreaded ability to endure to the end.  Don’t get me wrong—these are good gifts.  I just didn’t understand that I would have to trade in some of the other good things to get the better.  I loved my ability to learn easily and quickly—it made things very easy for me.  To lose this gift of knowledge in order to gain the gift of wisdom is hard. 

And it is very clear to me that I do have some things to learn that will (hopefully) teach me wisdom.  For three days straight I thought non-stop about the concept of Good, Better, Best.  Basically, that there are a lot of things to do with your time, but some are better than others, and others are the Best.  These I should choose to do first every day, every time, if possible.  One of the things I need to work on is reading my Book of Mormon a lot more.  In fact, I had the strongest impression one day that although all of the organic research and eating was a very good thing to do, it would not lead me out of this illness.  Rather, it is reading the scriptures and attending the temple that will do so.  These are the things that are BEST.  

I’m learning that enduring to the end means not just getting to the end of an event, or even just lasting through it well.  It also means that I’ll have to change throughout the process.  It’s not where you end up, but who you are when you get there. 

The Dreaded MRI

In which our Lady engages in Bathroom-talk. 

It occurs to me that most of you out there have never hung out inside an MRI machine.  I will therefore describe this great pleasure—it being my fourth time today.  First, you fastidiously prepare by wearing clothes that have no metal on them.  This saves you from the embarrassment and discomfort of having to change into a drafty and probably overly large hospital gown.  If you are wise, you actually began the second phase of preparation the day before by drinking as much water as you can.  This allows your veins to be nice and present when well-meaning nurses begin poking at you in order to insert an IV.  Warning, this may present a (slight) problem later.  But when your MRI tech happily makes contact the first time, you abandon all thoughts of later consequences and focus on the joy of tasting the saline they just stuck in you, which is a slightly salty taste.  This is an uncommonly odd sensation, since you didn’t actually stick anything in your mouth, but the taste comes from somewhere else completely.  

Next you lie down and ask for a blanket.  It comes warm and keeps you nice and toasty for at least 10 minutes until you begin to realize that hospitals really need to invest in fleece.  You have plenty of time to think about this, because you will by then have ear-plugs in and barriers on either side of your head to keep it straight and still.  You are given an emergency call button to hold in your hand and are told that you can keep your eyes open.  You don’t necessarily believe this, though, because you’ve been told twice before that it’s a big no-no to open your eyes.  Besides, there’s nothing to really see anyway.  A wide white visor is positioned over your head that is equipped with some sort of mirror, allowing you to see a section of the wall.  It has two boring pictures on it that you can’t really see anyway because you left your glasses over on the table.  You begin to slide into a three foot wide tunnel that arches up over you in a hemisphere.  The bed part slides you in nicely, but the part your arms are resting on stays still, so you are forced to lift your arms just slightly. Briefly you think, jeesh, what do over-weight people do on such a narrow bed?  That thought ends quickly.  It is at this point that you suddenly realize that the tunnel is white, as are the ceiling, walls, and floor of all MRI rooms ever created.  It is suddenly much colder in this sterile little unit.

 The tech tells you over a microphone—which you can somehow still hear—that it will be about 20 minutes for this part, and that the first section will take about two and a half minutes.  You close your eyes tight and pretend your head doesn’t itch as you lie still, still, still.  A series of loud pops and bumps begin to echo around you.  It sounds like a digital drum, and 80’s songs like “You Spin Me Round Baby Right Round” and “Safety Dance” immediately fly into your head, keeping double time with the regular beats and pulses.  This is probably a good thing because your meditations are only interrupted occasionally by the tech’s voice, “Three minutes, now.”  Eventually the beeping stops and you find the skin on the back of your arms sticking to the side rails as you are brought out into the bright light again, moved along as if you were processed food on some sort of assembly line.  You are happy to be out until the tech reminds you that you have another 10 minutes to go.  You are shot up with “contrast” solution, whatever that means.  The sliding robot move begins again and you are back in the tunnel.  Everything is going fine and you’re thinking, yes, I can make it, I can make it, when the noise once again ceases and you are told that it is all done. 

Unfortunately, that one time you squirmed seems to have ruined exactly 4 and a half minutes of MRI-ness and you have to do it over again.  You are now certain that an easy IV is not worthwhile, and consider pushing the emergency call button for just that—an EMERGENCY.  But the thought of doing another 4 and a half minutes of MRI time, even without a full bladder is unacceptable.  You hold tight and once again it ends.  As the tech takes you back to your locker to retrieve your belongings and talks pleasantly to you about life and the meaning of the universe, you are secretly watching for signs of a bathroom.     

3 Things that make MRI’s difficult:

1.       The lack of a restroom in an otherwise fully-equipped MRI machine.  (serious oversight)

2.       The added pressure of your hands and arms draped across your mid-section.

3.       That extra glass of water just before you left home that morning.

The Reappearance of the Reaper

In which our Heroine Lays out Escape Plans. 

             Much to my dismay, I found out this last week that the Grim Reaper may still be on my tail.  It is not exactly a surprise.  I’ve seen him out of the corner of my eye for months now, lurking in shadowy places where my thoughts don’t normally like to go.  He has shown himself more fully this last week because I have tri-/quad-annual MRI appointment scheduled for tomorrow.  If the results show that cancer is growing in my brain, then things will change drastically for me.  If not, then I will continue in the suspended bliss of an additional 3-4 month period, ineffectively dodging the reality of my ever-present, grim friend.

             Apparently I still desperately need the creative therapy that blogging allows, because over the last three days I’ve felt a constant itch to be working these thoughts out via the keyboard.  There is a mathematical formula present here: the less I type, the more I see the Grim Reaper’s shadow creeping up from behind me.  Whereas the more I write, the less afraid I am.  Perhaps it is the sifting and re-settling of emotions, or the ability to do something—anything—that provides this relief.  Either way, even as I type this, I feel more able to cope with the awful reality that I have a cancer of the brain, and thus there are physical, mental, and emotional consequences.  You’d think I would have figured this out by now.

              But you see, the awful truth is that even with all the wonderful life-affirming experiences I’ve had over the last few months, I am still afraid of death—especially the suffering that would precede it.  At these most piquant moments of fear, I can only catch hold of the spiritual assurance that I know I will be fine.  Thank goodness for that, or I would really be swimming.  There is a second truth that becomes clear to me now, though: I really don’t want to have to suffer (at all) in order to keep living.  I’d like to escape chemotherapy and radiation forever, thank you very much.  The tantrum-throwing part of me asks why there should have to be this price just for living.  Nobody else has to do chemo, why should I?  My grand sense of entitlement refuses to believe that life can’t be “fair.”

So, I need a plan by which I will escape the consequences of my fear, if not the cancer itself, at least.  I probably won’t know the results until my follow-up appointment until the 6^th of December.  Until then, I hope to write incessantly.  I will also read my scriptures or a conference talk every day.  I will eat more fruits and vegetables than ever before.  Possibly I will also get out my SAD lamp, which will hopefully not give me a headache from its blinding brightness.   All these evasive tactics I will use to my great advantage and defense.  The question is whether these things will enable me to dodge the Reaper’s sickle for so long. Two weeks, oh horror!

Recollections: The News

IN WHICH I AM TAKEN TO MAT-SU REGIONAL AND TREATED VERY KINDLY—AND FOR GOOD REASON TOO—IWOULD FIND OUT WHY LATER.


The rush of the emergency room, a swift IV, a quick X-Ray and CAT-SCAN, and then a slower MRI. And yet, the staff itself never made me feel like it was too rushed. Despite being an ER Doc, Dr. Lee was a calming man. He was very careful and slow as he came to tell me, “I’m hesitant to tell you this, but we found something in your CAT-SCAN, so we’ll need to do an MRI…”And later, with pictures included, “You have a brain tumor.” I am excellent with proportions and spatial thinking, so immediately I was calculating that it was baseball-sized—which is HUGE!!! I did not cry just then. I felt as if I was given an extra burst of calmness somehow. And so Dr. Lee continued, “Are you sure you understand?” Was he kidding? How could I possibly understand? What former experience was I to draw upon at this point in the summer of my thus-far charmed life? I know now that there is something special that happens to a person who truly cannot understand such news: her brain, whether or not tumor-ridden, just shuts down. My husband, Jon and I had no frame of reference. EVER. AT ALL. What complete bewilderment, startlement, and shock. In many ways, I feel like my brain is still stuck back at this stage.
We decided to go home that night instead of transferring immediately to Providence Hospital here in Anchorage. Before leaving, a nurse came in and handed out 3 blankets for Kirsten, Eva, and me. Its funny, because at the time I thought, “Aren’t these usually donated to people with serious problems, like cancer?” But almost in the same breath, “Well, I guess I have had an awful day…” Notice the cancer idea had not yet hit home. In fact, it would not until after the surgery. The nurse knew so much more than we did.