Friday, November 14, 2014

a heart for any fate

They put me back on the full dose Monday, and so far, so good.  I don't really feel sick at all.  Only the night sweats remain, and that's only happening a couple times a night.  Knock on wood.

We will scan again after Christmas and see what's next.  There is a chance these drugs get rid of my tumors all together.  In most, the benefits (even the complete disappearance of tumors) are short lived.

And so I am a little confused as to how I approach what time I have left.  It could be years (please!).  It could be much shorter.  I really have no way of knowing.  I would say that most people I have followed who have taken the BRAF drugs usually live about a year.  There are stories that don't follow this narrative (thank goodness), and we now have more drugs to try after I fail these then they have had in the past.  And of course everyone's responses are just so different, I don't know how fair it is to compare.

But sometimes the reality that I have tried all the best treatments on this tumor hits hard.  I wish I had a strong gut feeling here as to what is going to happen.  Even if I did, I think my gut feeling has been wrong so many times that I just don't trust it like I used to.  I've been mourning that loss of trust since my scans.  I really, truly believed that my cancer was on it's way out.

I've been in this what-to-do-with-my-time-left quandary before.  There is an answer.  I think Longfellow has a pretty good grasp on it.  James memorized this poem a couple of years ago for school, and it spoke out to me.  I just need to press on.

P.S.  Luke just memorized "In Flanders Fields" for Veterans Day and my heart literally skipped a beat when he sweetly said, "We lived, felt dawn, saw sunset glow, Loved and were loved..."  Poetry from your child's lips (especially when the pauses are not in the right place) is a pretty sweet thing.

A Psalm of Life

Henry wadsworth longfellow
Tell me not, in mournful numbers,
   Life is but an empty dream!
For the soul is dead that slumbers,
   And things are not what they seem.

Life is real! Life is earnest!
   And the grave is not its goal;
Dust thou art, to dust returnest,
   Was not spoken of the soul.

Not enjoyment, and not sorrow,
   Is our destined end or way;
But to act, that each to-morrow
   Find us farther than to-day.

Art is long, and Time is fleeting,
   And our hearts, though stout and brave,
Still, like muffled drums, are beating
   Funeral marches to the grave.

In the world’s broad field of battle,
   In the bivouac of Life,
Be not like dumb, driven cattle!
   Be a hero in the strife!

Trust no Future, howe’er pleasant!
   Let the dead Past bury its dead!
Act,— act in the living Present!
   Heart within, and God o’erhead!

Lives of great men all remind us
   We can make our lives sublime,
And, departing, leave behind us
   Footprints on the sands of time;

Footprints, that perhaps another,
   Sailing o’er life’s solemn main,
A forlorn and shipwrecked brother,
   Seeing, shall take heart again.

Let us, then, be up and doing,
   With a heart for any fate;
Still achieving, still pursuing,
   Learn to labor and to wait.

Saturday, November 8, 2014

I've had so many people ask how I'm doing.  I hate to complain, but let's be honest: The new medications are giving me grief.  

The first few days I had no side effects, and the pain from my tumor disappeared.  I could laugh as hard as I wanted to.  I was so relieved.  Big deep breathes.

This week I developed red painful spots all over my lower body and upper arms.  My joints have been acting very old (painful).  This seems to come and go.  I started having fevers at night, major chills even when I didn't have a fever.  Barfing here and there.  My feet hurt to walk on.  One of the worst side effects has been sweating the bed every time I fall asleep.  Even after an exhausting night (changing my clothes and bedding 5 times), I get the kids to school and doze off, and immediately wake up freezing with big beads of sweat all over my skin from head to toe.  Sleep deprivation sucks.

So I called the doctor yesterday and I am taking a couple days off the drug and we can decide if we need to lessen the dose when I start back up next week.  This is a pretty typical scenario, it seems like most people are not able to tolerate the full dose.  A lot of the time the side effects wear off eventually, so I guess we will just see what happens.  

This has kind of taken me by surprise, as I thought the side effects would be pretty manageable with Ibuprofen.  And most things are not that bothersome, but when I can't get the fevers and shaking down with the medicine, it's just miserable.  

The other night the shaking started early enough for my kids to witness.  I hate being sick, but I really hate being sick around people.  And I really hate being sick around those people.   They are very concerned, bless their hearts.

Sam dug out the electric blanket, wrapped mu p, and held me really tight , trying to control my shaking.  Luke made me hot herbal tea and warmed up his rice warmer for my feet.  James played Christmas songs for me so I could keep my mind off the misery.  I think I'm in pretty good hands.

My family has helped me out a lot this week, and Josh is beyond helpful.  My kids are absolutely the easiest, funnest, most darling things on earth.  We have lots of strength and faith to draw from yet.