Wednesday, October 27, 2010


Last night my wife, Ivonne, told me about events that happened after I returned to the transplant unit from one of my extended stays in the ICU. I remember somewhere between nothing and very little of that time, being either unconscious or lost in hallucination (in mine, I was being interrogated by agents of the government who accused me of having leaked super-classified information to the press).

Ivonne related that, for more than three days, I was constantly trying to tear out the IVs and remove my air mask and other treatment devices, a behavior I witnessed years before when my late mother-in-law was given a shot of atropine after a heart attack. Back then, my ex-wife and I stood at her unconscious mother's bedside for five or six hours preventing her from disconnecting everything that was keeping her alive; however, she was relentless. When we were both thoroughly exhausted, with great reluctance we left her to the nurses, who in all probability restrained her, something we couldn't bear to witness.

Back in my room, when I was behaving just like my late mother-in-law, Ivonne stood by the bed protecting me from myself. She told me it was quite difficult because I was very strong and very determined: it was a fight the whole time. She kept at it until a nurse asked her, when is the last time you had some sleep?

"I don't know, maybe a couple of days, I don't remember," she replied as she continued to struggle with me.

The bed next to him isn't being used, why not get some sleep?

"I can't—he keeps trying to pull out his IVs!"

Don't worry, the nurse replied, we'll get a sitter. Shortly afterward the sitter arrived, pulled up a chair, and was ready to take over. Still Ivonne would not stop, could not stop. Finally, the sitter told her,

"Look. I'm here, I'm going to stay here, he's going to be OK, I'll wake you up if there's any change, get some sleep!"

With that, Ivonne finally let go, fell into the bed next to mine like a big tree, falling asleep the instant her head hit the pillow. She slept for nine hours.

To my old friends: when I married a Mexicana thirty-one years younger than myself, and with whom I had almost nothing in common (language, culture, nationality, economic status, formal education, etc.), you were afraid that I might have completely lost my mind—what do you think now? As she told me this story, as the complete devotion it revealed sank in, tears silently dripped down my cheeks. A day later, as I write this, they're here again.

I feel like the luckiest man on earth.

Monday, October 11, 2010

Home at Last

Friday I came home after enduring, give or take, 113 days in hospital including eighteen in the Intensive Care Unit. I survived by a margin no thicker than a sheet of paper. Yet, I'm still here, and we may very well have killed the cancer (I say "we" even though most of the time I was unconscious or delirious). When all cancer measurements hit zero there will be a grand celebration!

It's almost impossible to use the word "cured" with multiple myeloma and get away with it, so instead I'll be happily talking nonsense about "molecular remission" and winking broadly. (Incidentally, my blood type used to be A-, but because my donor was O+, now so am I.)

There are many things to tell you, but I have the worst head cold I've had in years, which I think is entirely ridiculous and unfair, but, as Tony Soprano used to say, whaddya gonna do? Also it is time to rethink this blog — its purpose was to record the experience of the allo (which I utterly failed to do). Whatever will I do with it now?

I can't eat much, so I'm being fed by TPN. Even Jello tastes like sawdust and dead animals. Mainly, this is because the only functioning part of my sense of smell is the part that senses danger. Apparently, even Jello is dangerous.

A Girl from S. America
Last night my daughter Sharon was practicing the opening waltz of her QuinceaƱara with her mother, the choreographer. If you don't know what the QuinceaƱara is in the Latin world, let me tell you: it's a very big deal, the fifteenth birthday of a daughter. I know just how big because I'm paying for the dinner.

Although their dance looked great, they did it as a two-step instead of the three steps of the waltz, which drove me nuts, trained, as I was, for the cotillion. I tried to explain the basic box waltz but who can learn to dance from words in the wrong language? So I entered an altered state, one in which I did not remember that I couldn't walk. I couldn't help myself — I was going to teach them to waltz!

Now you must remember that I have not walked without a walker and relentless supervision for many months. I am also saddled with a huge, heavy backpack for the TPN. Nevertheless,  I put the pack on my wife (it was too heavy for me) and we walked (she walked — I shuffled) to the center of the room, where, in this miraculous altered state, I taught her the basic steps. Then we waltzed together to Strauss. It must have been adrenaline boosting me because today I can barely slide into my wheelchair. It was also the first time my bride and I had ever danced together (we even had to celebrate our first anniversary in the hospital last month). I was teary with joy for the rest of the night. Still am.

I must end for now on a note of sadness: my older brother died last month of lung cancer. I had not anticipated that I would take his death so hard. Now, I am the last of my family and it hurts.

Frank Joseph Nesseler, II

More later, when I'm stronger.