The word

A few days ago was the 5 year anniversary of the diagnosis. I wrote the following some time ago when remembering how things happened. By way of explanation, Acute Lymphatic Leukemia (ALL) is a very aggressive cancer. Time is of the essence when starting treatment. I knew this first hand. A friend that I met in the Philippines had this same diagnosis. It took her in a week. So I understood the immediacy of the situation.
R and I went out yesterday--had a date to celebrate the occasion. Just the two of us. :)
Here goes . . .

It was a conversation I knew would happen. You had told me what the plan was for the day. You had told me to come after work for the meeting with Doctor to discuss the strategy. I knew the outcome of the evening. I knew the word I was waiting to hear--dreading to hear. I passed through the day in a haze of numbness--thankful for a new job to distract me--seeking to avoid even the fifteen minute break. Fifteen minutes was time enough to emerge from the numbness into the pain.

I left your place of work, thinking the task of driving would be enough. But the miles of highway sameness offered no solace. I was a pendulum between numbness and pain those sixty miles. A soul between purgatory and hell.

"There you are!" you called out cheerfully when I entered the room. You were flanked on either side by Doctor and Nurse. You three had already started the conversation, but would review for my benefit. Doctor began at the top, explaining diagnosis, disease and options. I listened quietly, nodding attentively. I was waiting to hear the word. I knew it would be spoken before the end of this meeting. Would I have the strength to bear it?

Into my head came an image of our children. I saw them as clear as if they were standing there by your bed. Our children. Our little boy and little girl. Images of them came to mind--after they were born. First was our son, then within two years our daughter. We had them close in age so they would be companions as well as siblings.

You and I had made a similar arrangement as my parents had, so I named our son, then you named our daughter. I saw our blond, blue-eyed children as infants. I thought about how we would gaze at them in amazement and pick out familiar features. We would even see our parents' and siblings' features in our children's eyes and noses and chins and hands.

Our little boy was the picture of you in your youth. He would follow you around--Daddy's little helper. He would always insist on accompanying you to the garage. You were stern but gentle with him. You would take the time to show him things that he needed to know--how to wash and wax a car, how to fix a stereo, how to pet a cat properly.

Our little girl had you completely bewitched. She would wear her dress-up party costumes and invite you for tea parties. Even at your busiest, you would make a point to give her special attention, even if you couldn't sit down next to Mr. Bingles for crumpets and cookies.

You would shake your head in amazement to see an obvious feminine heart forming in our young daughter. And I would thrill to see the young man our son was developing into--already showing signs of those character traits which I so admire in you.

Doctor continued, broaching the subject of a medical study, that you were a prime candidate, that it was entirely up to us . . .

My mind went to my parents, the proud grandparents of our children. We had wracked our brains for weeks to think of the perfect way to bring them the news of their first expected grandchild. How my mom had cried. My dad had embraced his new role with fervor, "horsey-rides" "airplane" and "hide and seek" despite his age. My mom worried and scolded him, but he didn't care. Now that our son was getting a little older, my dad would take him to every airshow he could, pointing out all the different planes. My mom would sit with our little girl and teach her to stitch and sew. "She's quite talented" my mom would beam proudly, inspecting her handiwork.

The word was in the wings, waiting for its inevitable entrance into the conversation, into our lives. I sensed it was near. I glanced at you, wondering if you felt its presence. You were listening to Doctor. He had begun.

He was reading from a list. Page upon page of poisons. Tools they would use to fight this enemy which had invaded us.

The laughter of our children echoed in my mind as the side effects were lined up and ticked off. A whole new list for each poison. I waited and listened . . .

"...nausea . . . diarrhea . . .rash . . . anemia . . . blurred vision . . . dizziness . . . headaches . . . cramping . . . bleeding . . . hair loss . . . blindness . . . "

Then suddenly it was there. The word. Spoken. Hanging in the air. Filling the room. Mingling with our children's laughter.

Doctor didn't stop reading until you reached over and took my hand--the closest you could get to comfort me. Nurse sprang into action, trying to find a tissue for me. Are there no tissues in this room for this weeping woman? Doctor looked at me, surprised. I had been taking it all so well, until the word was spoken.

"Do you two have children?"

I looked at you through my tears.

You answered Doctor for me.

Doctor and Nurse both waited respectfully until I quieted. Doctor gently explained that there was no time to delay. No time. We must start the regimen tomorrow. I nodded. I knew we had waited too long.

Doctor continued with his list. No more surprises. The room was silent, except for Doctor's voice . . .

". . . seizures . . . loss of appetite . . . muscle spasms . . . blood in the urine . . . dementia . . . . . . "


Peace
C

An Upcoming Anniversary

The next few posts I am adding to mark a milestone for me and my husband. October 6, 2003 R was diagnosed with Acute Leukemia. It was a dire diagnosis that changed our world. His treatment required months of chemotherapy followed by a Bone Marrow Transplant. He was out of work for a full two years recovering from the treatment. He is now two inches shorter, has cataracts in both eyes, must carry eye drops with him all the time, has permanent scars on his chest from two Hickman ports they had to insert, will sometime soon need both shoulder and hip replacement surgery . . . but he is alive.

We are thankful to all the doctors and nurses who walked us through the toughest of times with an amazing amount of patience and grace. We are also grateful to all our family and friends who stood by us and provided tangible help to us. JT and DC who crawled under the trailer in sub-zero temps to work on plumbing that awful January. AK who fought the phone company to get our phone back in service. IW who provided financially when we had almost no income. TB who cared so wonderfully for our cats so we didn't have to get rid of them. KP who came with his snowblower every storm that winter. KS who sold us the car at a ridiculously low price when my car finally gave up the ghost. Countless others who sent cards and called and visited at the hospital. These were the people who kept us sane and didn't judge when insanity won out.

Five years later it is sometimes easy to forget what we went through. Though I would never wish it on anyone, that time is precious to me. The reality of life and what is important was so close during that time. I remember when Gracia Burnham returned home after 14 months as a captive of the Abu Sayaf rebels in the Philippines. She said something similar--that when she was a captive, if she was thirsty or hungry or sick, she was dependant on God to provide for her needs. Now that she is home, if she is thirsty, she goes to the refrigerator. She missed the tangible reality of her dependence on God. I know what she means. Although I felt far from God during that time, I know I was more in his hands then than I am now that the sickness is mostly a memory.

I have recently been reuniting with some old friends through Facebook. In the catching up with what people have been doing since I last saw them however many years ago, I discovered that at least one family is familiar the situation of a dire diagnosis. In their case, it is a young son. It's funny. Having gone through something like this, you run the risk of developing kind of an elitist attitude. As if to say "I've done something important. I've looked in the eyes of death . . . what have you done?" I was squarely put in my place when I realized that my story is not so unique. I wrote the following in response to this discovery. I didn't really finish it, it kind of just peters out. But here it is . . .


So you know . . .

You know the day-by-day, hour-by-hour existence, when the word FUTURE changes its meaning. It becomes closer--you turn claustrophobic in its definition. You cannot plan your day, your wardrobe. You cannot trust that the short sleeves will be sufficient, because the morning can turn to afternoon, to evening, to midnight with no prior warning.

So you know . . .

You know what it is like to sit through biopsies and blood draws and spinal taps without flinching. You know how to look into his eyes and become the rock, the anchor. You cannot wince--no sympathy pain--except for in your soul where it doesn't show. No sign of weakness. You are strength. You are comfort. You are advocacy. You are the stiff upper lip.

Did you become the weakness as well? Did you cry because you recognised that he would not? Did you rail against him in his helplessness? Did you make your appeals to God? Did you long for others' help, then resent it when it came?

Did you want to scream or spit when other people looked at you in amazement. They shook their heads and told you that they could never do what you were doing--as if you had chosen this life for yourself--for him. Of course they would do what you do! What option would they have had? What option did you have? You longed to pick up your cards and go home--declare that enough is enough. But retreat is impossible. Escape does not exist. The past is unattainable. The future is non-existent. There is only the present. The pain, the anxiety, the boredom, the desperation, the craziness, and the waiting. The ever-present waiting.


JM, Thanks for the lesson.

Peace
C