Myelofibrosis–A Personal Journey

Sharing Our Story, Staying Connected

A Feeding Tube Plus…

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Wedding Day 1986

My last post on December 12th included a snippet of our relationship history. Many of you commented about and seemed to enjoy it.

Family and friends know I’ve published 3 books, 2 young adult historical fictions and 1 dark comedy/cozy mystery. But…motivation and ideas have dried up as of late. So, going forward, I thought I’d write our very sweet and uncommon love story, little by little. No plan to write another book here, just the highlights. Updates about R’s condition will come first. And those who are interested can read to the end. I am sure many of you couldn’t care less about the girl meets boy story.

Now about that feeding tube.

We didn’t realize when this process started that after receiving the donor cells, R would get MORE chemo via his IV on days 1, 3, 5 and 8. Day 0 is the day of the transplant. This next phase of chemo can worsen “mucositis” or sores in the mouth, throat and esophagus. R already has some but they will multiply and the skin inside the mouth will slough off. Eating could be very painful. In anticipation, a nurse will insert a feeding tube in R’s nose that’ll go into his stomach. We thought that would happen IF it became necessary, but I guess it’s standard practice and everyone gets the feeding tube.

As with everything else, R’s got a great attitude about the tube up the nose! He’s still walking the halls as much as he can, although he’s gotten weaker, making it harder to go very far.

No hair loss yet but it’s coming—all parts of his body will go bald. So weird to think about. He’s got great hair!

If things continue to go as expected, he should go home between Christmas and the 1st week of January.

Friends and family,

He CAN have visitors at the hospital. No one who is sick or lives with someone who is sick. Mask required. Coordinate with me if you’d like to stop by UW Medical Center.

LET THE LOVE BEGIN

No, not really. There was no love at the beginning. I’m not sure what you would call it. I kid you not, the first time I saw him a rainbow appeared above and my heart bounced like a rubber ball from a kindergarten Christmas stocking. I felt SOMETHING and it felt BIG. Yes, I was only 14, but 14 year olds are hormonal and not just the guys.

A school friend asked me to go with her to church that Sunday to help the freshman make breakfast for the sophomores, juniors and seniors. None of the freshman could find their way out of a toaster box with a map and I loved to cook.

My family attended mass on Christmas Eve and Easter only, mostly to give my mother an excuse to shop and buy us matching outfits. Church was not my thing, but I went that Sunday in 1980, if only to be bossy in the kitchen.

After displaying my master chef skills with a fancy menu of French toast, bacon and fruit 😆, everybody sat in a circle, group leaders included.

To my surprise, they didn’t pray or read from their bibles, they started planning a youth group variety show. R sat across the circle from me as the would-be emcee.

Let me tell you—I thought he was a REAL MAN at 18 (he attended college after skipping a year of high school). He had a wispy blonde mustache and FEATHERED white-blonde hair, à la Sean Cassidy or Almonzo from Little House On the Prairie. Such a fox, as we said back then.

And what did R feel when he saw ME? Nothing. He didn’t notice me at all.

But he radiated “Special.” “Gentle.” “Humble.” “Sweet.” It was all I could do not to stare at him. But I probably did anyway.

I turned into a CHURCH GOER” that day. I was there every Sunday after that. No kitchen skills required. 👩‍🍳

4 responses to “A Feeding Tube Plus…”

  1. Donna Chaney Avatar
    Donna Chaney

    I love reading and I love your story! You are both beautiful people! Prayers for continued healing!

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    1. dianajnoble Avatar

      Many thanks.

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  2. Rick Sleister Avatar
    Rick Sleister

    What a great story.
    I will be getting an ultra sound of my kidney on Monday the 22nd at 10am until around 11am. Would love to give you a break and buy you a coffee at the Starbucks in the hospital.

    Drop me a messenger if you think you can do that.

    Rick

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    1. dianajnoble Avatar

      Hi Rick. Will you be at Hutch or UW Medical Center? It’d be great to see you.

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