Facing Myelofibrosis: Can I Get a Light

"Can I get a light, please?" was all I could say. My heart was pounding out of my chest from anxiety and fear, disguised as anger. How? Why? My mind was all over the place. "Please... can I have the lighter!" I demanded.

He handed it to me without saying a word.

Guilt and Frustration

Shit, now I feel guilty. He has feelings too, and I'm sure he is concerned or maybe even scared. But it isn't his reality, his body, or his lab results. He wasn’t the one airlifted to Portland with a platelet count so critically high that a priest was called in. My primary care doctor called me an anomaly, which I must say doesn’t really instill a lot of confidence in his knowledge and ability.

I took a pull off the cigarette, held back a cough, and then passed it to my husband. "Here, take it. Does everything I do require your approval first?"

Fighting for Control Over My Life

I pleaded, "Please don't take away my ability to live life because I'm labeled terminal. I need to figure this out to my own satisfaction, get all the facts, find out what I can and need to do to stay alive. I might not want to do anything at all. It's about the quality of my life. No one else's."

I heard myself talking, and it was I, I, I. But it is me. Those lab results were mine and mine alone. I have cancer. I was given a time frame for my life.

The Diagnosis: No Good News

There was no good news. My heart has blood clots. My liver, my kidneys, and my spleen, all riddled with blood clots. I had a stroke, and now a bleeding brain. I’m left to sit all day and think about dying, weighted down with all of the what-ifs and how-comes.

This constant stream of questions has no answers. Could a blood clot kill me? Does my liver fail, or do my kidneys? Maybe I'll just drown in the next seven liters of fluid they pull from around my heart.

Overwhelmed and Searching for Understanding

Can anyone stop my head from spinning? Or take my place? Or really understand? Because statements of false hope and the condescending glance and pat on the hand are insulting. My life has been reduced to waiting rooms and stale magazines, and the smell of antiseptic now nauseates me.

"Let me get another drag, babe, please," I said sweetly. "I don't want to fight. I'm just overwhelmed and frightened."

And with tears in his eyes, he said, "I know, honey. So am I."

A Love Tested by Terminal Illness

I am now looking across at the man who, just three weeks ago, was standing next to me in a little chapel in Las Vegas, exchanging the words I do with me. Finally, at 55, I found the man of my dreams, my soulmate, the one who completes me as a human being.

This man has shown me patience and understanding that surpass my comprehension. He sees what's important to me and gives it value. He nurtures my hurts and insecurities and encourages my dreams and desires.

And in return, I hand him… myelofibrosis.

A Final Gesture of Surrender

And so it begins. What I thought was to be my life’s next chapter has now become my last. And with a strong pull off the cigarette, I pass it back to him as my final gesture of surrender, exhaling in defeat, watching my hopes and dreams dissipate with the smoke.