Last night was our local, annual “Light the Night” walk to benefit the Leukemia and Lymphoma Society. We have done it every year since my husband got diagnosed with Chronic Myelogenous Leukemia (Jan 2002).
This year I missed the walk because I had to work. I wish I had been there. Something about the red and white balloons flashing as we walk in the dark brings a tear to my eyes.
My husband raised $1000, earned a special T-shirt and got brought up on stage with the other high-earners.
I am so proud of him.
Not just because of the money he raised.
I am also proud of him because he has lived–and lived well–with what is still considered a terminal illness for over 6 years now. He has been an example to others, a support, and he has always, always, remained positive.
Sure, those first couple weeks were scary. He was SICK. We were SCARED and we didn’t have access to the medicine we have now. I had to give him injections that made him brutally ill.
Once he started Gleevec however, life returned to normal within days. Literally.
And he has been fine pretty much ever since. We had one episode where he was out of remission and he is now on the max dose of Gleevec.
Is the second remission a durable remission? Not always.
But right now, there is no trace of the cancer marker in his body.
None. Zero. Zip.
We’ll take it, even if it is only for a few years. He was 35 when he got diagnosed; that is much younger than average. At that point, the doctor told me he would have 5 – 9 years to live.
Well, its been close to 7 and no sign of trouble exists. With the newer medicines (the Second-generation gleevecs that are coming out), there is no estimated survival time, just the thought that its a longer survival time than ever.
We have perfectly matched bone marrow from his brother on ice at the hospital. He will go to transplant when—and if—-he needs it.
But for now…he is fine.
I am so proud of him.
I see you flying,
Hair tousled, smile on your face
You close your eyes as the wind brushes your eyelids.
A peaceful look, no doubt.
I hear you cheering as you
Nearly touch the sky
The stars reflecting in your smile.
You wave at me.
And my eyes fill with unwanted tears
As I raise my hand in response.
Someday you will wave goodbye
What blessing is there in knowing how it will happen
When you finally do touch the sky
You will not come lightly back to earth when the ride stops,
Running to me, a quick kiss on the lips before the next ride.
You will continue on, into the stars and beyond
And I won’t be able to kiss you anymore.
*
In the evening of the morning
of the day we went to hell.
In the after of the later
of the time when you were well…
I can wander I can wonder I can sit and bow down under
All the wailing and the thunder that tears my heart asunder
Yet still you are before me
I love you, you adore me
My one and only lover is now threatened by another
Are we bigger are we stronger
Can we hold on any longer?
We fight the fight and face the night
And grab the apple, take a bite.
for in knowledge lies our power
And in every midnight hour
we reach for each and every minute
that doesn’t have your illness in it….
*
Beast, how I hate you.
I hate your pervasive ways, your interfering serpentine madness.
I hate the way you took what we had and twisted it around
Until we have to fight to hold on to what we deserve.
Beast, We will beat you.
We will stop you with chemicals, with toxins and poisons,
We will remove you from every cell of our lives
From every thought of our future.
Beast, you will be gone from our presence like a bad dream in the sunshine.
You will be crushed under our feet like an eggshell into gravel.
You will be sent far away, deep into the labyrinth sewers of discarded medical waste.
And we will link our hands together
And dance upon your demise.
*
I watch you shiver and watch you shake
I watch your cough and the sounds you make.
I wipe your head with a cool rag
I get the inhaler from your bag.
I start to cry and then wipe dry
the tears I fear I have to hide.
I miss the nights that came before
When we snuggled behind the bedroom door.
I grab the needle, the medicine
hit the plunger, push it in.
*
sneaking around the corners like a silent thief at night
riding in the backseat when stopped at the traffic light
dancing in the bloodstream or in the random cells
coming like a coward, leaving a path of living hell.
What creeps within the corners
what knocks upon the door
what comes when no one’s looking
and then sneaks away once more
And in the final moments, while all is calm at night
a sudden breath of darkness and another soul takes flight.
there is no rhyme or reason
there is no way to say
whether you or me tomorrow
whether someone else today
I hear the spiders laughing
while spinning on their webs
I hear the planets sighing
While those behind are crying
At another sudden passing
*
Start with six little green and yellows in a divided dose a day.
The round orange one to offset the side effect of the green and yellows.
The purple capsule to mend the pain that the little white one caused.
The big white ones pack a punch so don’t get addicted (the addiction of the stars!)
the clear stuff comes from a needle. You will be quite sick in 8-10 hours.
Not so bad, a fever and chills.
Oh yes, you might lose some hair.
Do this three times a week.
Don’t forget your vitamins, your cholesterol, your blood pressure pills.
Drink 10 cups of water a day, and remember–
think positive.
*
This morning I woke up early, and like
every other morning, I peeked out the window
to see what weather I will face this day.
Imagine my surprise, when I was near blinded
By a flash of early-morning sunlight.
So bright, and so uncommonly warm.
The grass outside was colored a deep
emerald green, and I could see the tree in profile,
Small buds standing out on the branches like
miniature sentries, holding on for the spring.
I sighed and I laid back down for just another minute.
I turned to look at you
A small sliver of the sunlight fell in the window and carressed your face.
Golden light across your cheeks, I gently touched you and we shared the warmth.
You smiled as you slept.
And I smiled too.
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