I feel like Alexander, except it isn't a day. And no one seems to know how long 'it' will be.
On Saturday, throat pain began to get bad. By Sunday, it was unbearable. Swallowing anything-- ice cold water, cream, milk, warm soup- felt like shards of glass going down my throat. Agonizingly painful. Give me two open heart surgeries, just don't make me finish that Ensure. Yes, that bad.
Since swallowing is not only painful, it is difficult, getting a Darvocet down became impossible by Sunday. So we read the package insert on the Fentanyl patches. Scary, but not too scary. Here we are 21 hours later. The patch burns and my heart rate is elevated, but at least it has done nothing for the pain.
At radiation today I asked about pain. That was interesting. The nurse said the patch could take up to 24 hours to work. Maybe I need oxycontin. I was pretty unsure about taking oxycontin for any reason, so she went in search of something else. If Darvocet came in a liquid or a patch, but no luck.
Dr. Gemmell is on vacation, so I had a stunt double doctor. First off, he said the Fentanyl could take up to five days to work. Five days! What the hell is the point of that??? So he recommended we wait until Friday. At that point, we could double the patches. Twice the burning, twice the other side effects, twice the pain relief. Oh, what is 2 x 0? Nice.
He did make the really had sell for the feeding tube. I was ready to listen. No more swallowing to eat and drink. Better hydration and slowing of the weight loss. Quicker healing. As much as I don't want it, maybe I do. What should I do? What would you do? I wouldn't be pondering it if we could knock back this throat pain a little. We shall see.
Down 2 and 1/2 more pounds this week.
I have potato leek beneprotein soup waiting for me and ice water. Pay no attention to the screaming.
Love,
Kiara
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3 comments:
You are an amazingly strong person. I can't imagine how hard this is becoming. Do you need a hand to squeeze? Do I need to come back and help the doctor's to understand the pain? You have tried long and hard to avoid the feeding tubes but now it is time to give your body a chance to heal. I know that you will still need to talk and that will keep your tongue working. I believe that you gift to gab will be a blessing for you.
Stay strong! Love you,
Dawn
To Hope
by John Keats
When by my solitary hearth I sit,
And hateful thoughts enwrap my soul in gloom;
When no fair dreams before my "mind's eye" flit,
And the bare heath of life presents no bloom;
Sweet Hope, ethereal balm upon me shed,
And wave thy silver pinions o'er my head!
Whene'er I wander, at the fall of night,
Where woven boughs shut out the moon's bright ray,
Should sad Despondency my musings fright,
And frown, to drive fair Cheerfulness away,
Peep with the moonbeams through the leafy roof,
And keep that fiend Despondence far aloof!
Should Disappointment, parent of Despair,
Strive for her son to seize my careless heart;
When, like a cloud, he sits upon the air,
Preparing on his spell-bound prey to dart:
Chase him away, sweet Hope, with visage bright,
And fright him as the morning frightens night!
Whene'er the fate of those I hold most dear
Tells to my fearful breast a tale of sorrow,
O bright-eyed Hope, my morbidfancy cheer;
Let me awhile thy sweetest comforts borrow:
Thy heaven-born radiance around me shed,
And wave thy silver pinions o'er my head!
Should e'er unhappy love my bosom pain,
From cruel parents, or relentless fair;
O let me think it is not quite in vain
To sigh out sonnets to the midnight air!
Sweet Hope, ethereal balm upon me shed,
And wave thy silver pinions o'er my head!
In the long vista of the years to roll,
Let me not see our country's honour fade:
O let me see our land retain her soul,
Her pride, her freedom; and not freedom's shade.
From thy bright eyes unusual brightness shed---
Beneath thy pinions canopy my head!
Let me not see the patriot's high bequest,
Great Liberty! how great in plain attire!
With the base purple of a court oppress'd,
Bowing her head, and ready to expire:
But let me see thee stoop from heaven on wings
That fill the skies with silver glitterings!
And as, in sparkling majesty, a star
Gilds the bright summit of some gloomy cloud;
Brightening the half veil'd face of heaven afar:
So, when dark thoughts my boding spirit shroud,
Sweet Hope, celestial influence round me shed,
Waving thy silver pinions o'er my head!
I'm not very good at using my own words, but I like Keats and thought that these words expressed what I mean. Hope burns eternal...
Lora
That's pretty rotten, horrible, terrible, no-good, AND very bad. I know the feeding tube/not feeding tube decision is a big one, and I know you'll do your Kiara best (which is 5x better than normal or "classic" human beings) with whichever route you take. And I wish I had a patch for you.
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