In 2002 we ran away from Illinois where we were born and raised, and started a new life in SW Florida. This blog is about me (an eccentric old artist), ROM (my Real Old Man), Isabella (our neurotic Standard Poodle) and Emmy (our crazy snake killing Jack Russell Terrier). Oh- and the neighborhood old people. Life is good in Florida!

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Friday, January 31, 2020

It's not all flowers and joyful moments...

I got an email today from a friend suggesting that I not candy coat this dying stuff and make it pretty romance. I agreed, she's right. There's a lot wrong with dying of cancer. But there is a romance element playing out that I didn't expect. I've always loved my husband and thought he was amazing. I think I took it for granted and stopped noticing how special he is. Now I'm seeing him with new eyes and falling in love all over again. But I've been asked to be more real so here goes... some notes I've been taking...

Pain- no such thing as complete relief of pain. I'm learning I have to work with the meds. Instead of taking my meds and relaxing to let them work, I would get up and stay busy until I felt them wearing off. I'm now trying to work with them. I don't want to build up a tolerance too early. 

Sleep is elusive. I'm more comfortable in a semi-reclining position. Lying flat causes more spine pain. But when I don't spend some time sleeping lying down, my ankles and feet swell up. 

Food and taste- Not much of an appetite and small amounts fill me up quickly. I do better eating small amounts throughout the day and evening. I'm not undergoing any treatments so nausea hasn't been a problem. Just a bloated full feeling. I continue to maintain my weight - I got the damn fat cancer. 

Today I developed a nasty thrush infection in my mouth and throat from the steroid inhaler I've been using. I called my nurse, Trisha, as soon as I saw my mouth and throat. By afternoon she had me on something for the thrush and switched me to a nebulizer and new meds for my lungs. Our new answer to everything when we wonder what to do about something- call Tidewell! 

And Mike woke up with a cold this morning. Not the flu or Coronavirus- just a cold. But now he feels miserable and we also have to worry about me catching it. Little things are a big deal now. So we're a bit quiet and wore out tonight. 


9 comments:

  1. Have you seen "God said, Ha!" It's really darkly funny by Julia Sweeney.

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    1. Darn no. I just checked. I watched it on HBO not long after my first husband passed from cancer in 1999. Best I find now is on Amazon Prime Video for $4.

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    2. https://www.imdb.com/title/tt0119207/?ref_=nv_sr_srsg_0

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    3. Oh, I read the book when it came out. I love Julia Sweeney, but I had no idea of all she's been through until I read it. It was alternately very funny & very sad.

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  2. ♥️♥️♥️♥️♥️♥️♥️

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  3. Romanticize all you want, ROH. Nobody is going to run out & get some cancer. And nobody gets to tell you what to say or how to say it. Share what you want, how you want. We'll laugh & cry with you. And wish like hell there was something we could do to help, because we know...it's not a day at the beach.

    BTW, has your nurse mentioned if they still provide hospital beds for patients? They brought one out for my dad before he got home from the hospital. It might ease your pain & swelling issues, because of the functions of raising & lowering each end as needed? It was provided free then, but that's been 20 years ago. Also they brought in an oxygen thingie, too, for Dad. PS If you get one, don't forget: no candles. (Yes, some of us are that stupid. #me)

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    1. That hasn't come up yet. Right now I'm choosing an overstuffed chair and oodles of pillows. For some reason the pain is worse when I lay down, and more comfortable in a semi- upright sitting position with my feet and legs on the ottomon. I'm having issues with my breathing now, too- sitting up helps with that. But tomorrow? Who knows?

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