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.

11 comments:

  1. Oh, Ruf, I am so very sorry to hear of your loss. Seems like there just had to be bad news to mar your joy. I wish that had not had to be. Russ (Anar) and I are elated that you are on the mend, though. I've kept him apprised of all your progress here. Wish I could get him to dance with me. We sort of did a few weeks back, with him all stiff legged and ultra reluctant. Men! Er, present company excepted, of course. The kin awaits your recovery and return to the magnificent world of Middle Earth. Until then, take good care and be blessed.

    Cathy (Isil)

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  2. I'm so happy for your recovery, Lon. I'm sure you will be eating lots of ice cream and jello soon. My condolences to you for the loss of your brother.

    Roslyn

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  3. Hurray ! Home at last !!!
    I recently read a study that showed that the best part of traveling was the opportunity to come home! When they train rabbits (not that there is a lot of that going on) they reward behavior bu letting them go home to their cage. I know you must be happy to be home as well. Lets hope that you stay there for a long, long time.
    Our condolences to you for your loss.
    Jeff / Dr.J

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  4. yea! We are happy for your return home to be with your family and friends. You are truly blessed now to get stronger so you can enjoy each day:) Sorry to hear of your loss while in recovery. Ralph and Lynne

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  5. You are true Myeloma Warrior. The continued recovery will march on and looking back the experience will fade as you and your family enjoy your life together.

    Eric Vogt
    Palm Desert, CA

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  6. Aaahhh, dancing the night away, what a wonderful visual. I'm so glad that you were able to leave the ailing body long enough to enjoy those moments of togetherness that you hadn't been able to enjoy before. Congratulations on going home after a long, long and hard stay in the hospital. I hope that your recovery continues to be on the upswing and you return to your life as you knew it before MM soon.
    Nancy in Phila

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  7. I have intended without stopping and am glad to hear the news of your return to home and hearth. The death of a sibling is a hard bit to take, so I send condolences, knowing it will take more than that to ease the pain of that loss.

    I will also look forward to further postings of your new life which must be an improvement on so many levels of the one before... Happy birthday! Begin again...

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  8. Lon...so VERY happy to hear that you are doing so well!! And, so very sad to hear that you lost your brother. You have my deepest sympathy...........Happy birthday, Lon. May you have many, many more and may you dance many more dances with your beautiful bride!

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  9. You are a true inspiration! I look forward to your further postings which bring a smile and hope to us. HAPPY BIRTHDAY!!
    Tina UK

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  10. Lonnie;

    I'm glad to hear you are home and alive AND dancing! What a journey you have endured. I hope that somehow you can recount the experience for us all. Your writing and perspective are unique.

    Be well, enjoy your daughter's birthday celebration.

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  11. Dear Lonnie -
    You didn't mention your brother in our phone conversation. I am so sorry. What luck that you have Ivonne and her children to keep you smiling.
    Much love,
    Kat

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