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.


  1. Learning to wait is a very hard thing! I hope you can find an abundance of peace to fill each little moment.

  2. It's so hard to answer you question...I know you aren't looking for an answer from me, but I find myself asking the same thing you are. We are given these statistics and compare ourselves to others and would like to grasp onto something to feel some sort of control over a disease that keeps all of the control for itself. On the other hand, I've decided to look at it positively and feel blessed that I have a timetable and, in turn, live EACH day much differently than I did precancer. I try to live in the moment and appreciate what I have right here, right now. Sometimes I even picture how I would feel in a situation if I were not here anymore and watching it from the other side. It especially helps me to do that when one of my kids is having a tantrum ;). I'm not saying you don't live your life in the moment--I'm positive you do, I'm just kind of rambling on to let you know I feel the same way you do and it's hard. I think about you a lot and pray for you daily. I also still have lots of hope for you and your battle.

  3. 'Loved and were loved' by so many. You are making me cry. Love you friend.

  4. Oh Alisa - I m loving you and thinking of you everyday. Thank you for the poetry and for the poem that is your life. All my love to you.

  5. I love that last stanza, "Let us all be up and doing." Wonderful!

    Alisa, no matter how long you have left on this earth (and I pray it will be a long, long time!), know that you are such a fantastic example of "lives of great men" that remind us. So often I think of you when life feels heavy and I need more courage. Thank you for that. I love you much!

  6. You've got devotion and love coming from New York, Alisa. We love you and so admire your spirit, your life, your heart.

  7. I think of you all the time and love when I catch a glimpse of you at school. You are so strong. When my son was doing so bad, my prayers turned into pleading with Heavenly Father to please just "fix it!" I want to be like you when I mentally grow up. I will keep praying for you and looking out for those cute boys of yours! :)

  8. You are so beautiful inside and out. You (and your family) are always in our prayers.

  9. You really do live like the poem says--the "up and doing" part just says it all about you. I love you!

  10. thank you for continuing to tell us about what your going through- we will never fully know what you have gone through. We pray for you always.

  11. I love you. Thinking of you. Praying for you. Admire your strength. You, Alisa are incredible and are SO very loved.

  12. Alisa,
    Though I do not know you personally, I wish I could give you the gift of time. Lots of time with your adoring family. Outrageously healthy and joyous time. May Heavenly Father grant your children's deepest wish... and restore your health for them. We are still praying in Oregon for your miracle and believing in a complete cure for you. May sunshine greet you tomorrow morning with a permanent, healing warmth Alisa. Praying so hard for you and yours. Heavenly Father, please heal Alisa now.

  13. Hi, love your strength and positive attitude. my husband was just daignosed stage 4 melanoma, he just started the d nib and T nib for the BRAF mutation. Would love to swap stories and learn from you. Thanks.