Monday, August 4, 2014

You Want Me to Put that WHERE?

My life right now centers around a blue pill box - the kind with a box for each day, split into AM, Noon, Evening, PM. Thank goodness there are some things to help with my chemo brain...(I forget at least one important thing a day...my brain is a foggy place these days - which I beg you to keep in mind as I write...my thoughts are so scattered now...it takes me far too long to write a complete thought. But we'll try anyway...)

My day starts at 6:15am when I take the chemo. There is a precise order to things because of what meds need to be taken on an empty stomach, and which ones require food and timing things which knock me out most so I can take a nap. Chemo is a "no food" set of pills, and then I can't eat anything for another hour. So I drift back to sleep if possible, or scan Instagram for lovely photos.

About 7:30am, my sweet mama makes me breakfast and I take my next two pills...the ones that require food.

If I'm feeling good (which sadly, over the past week, has not happened much), I go to work for a few hours. My incredible team is so supportive in understanding that as much as I want to be there, cancer is a unruly beast and I have yet to get the meds figured out to a functioning level yet. This week, between adjusting to my new antidepressant/mixed with my other drugs that make me drowsy as side effects, I have done little besides sleep. I haven't even had much energy for reading...today I actually landed back at the doctor because I had had a sore throat and white spots on my tongue and we (I apparently talk as "we" now, but I refer to me and mom and my nurses) were worried it might be an infection...it's only thrush. Something people on chemo often get due to the high numbers of medications they are taking. I had it earlier this month too...so we added another pill for the next 7 days to clear up my throat. I hate thrush. It makes your mouth hurt and I already can't taste food due to a few of the pills I'm on...But my mouth should hurt less after a few days of the thrush medicine and then hopefully I'll be able to eat again.  So thrush pill about noon for the next week.

When we were at the doctor today, I was asking the nurse practionier about tips for the usual dry mouth/ dry nose side effects of chemo (which are made worse by my nightly oxygen use). We were able to get a humidifier today from Norco, but the coconut oil I'd been putting in my nose wasn't helping much and my nose is now so dry from the oxygen and smokey Bend summer that it really is hurting...she said the best thing for dry nostrils? KY Jelly. (You want me to put that where?) I had to laugh...humor for the win! But seriously, KY Jelly apparently is the trick...my grocery basket when we went to the store to pick up the thrush med from the pharmacy, KY Jelly, a few things that sounded good (cantaloupe, carrot juice and sugar free throat lozenges to aid my sore throat) was a pretty funny sight.

After work (when I make it), mom and I usually have one errand to do. That's all I can handle right now. A quick trip to the bank, or to pick up something at the store. There are about 3 doctor's appointments a week to follow-up on the drugs and how I'm handling them, or when the home health nurse comes to check-in. The rest of my day involves sitting in front of the air conditioner and fans in our living room trying to combat hot flashes and the aches and pains of cancer, but really that means sleeping because the pills knock me out so much that I now sleep from about 1 to 4:30 every afternoon. We have a little dinner about 6, and by dinner I mean I nibble on whatever doesn't hurt my mouth (and no matter what lovely thing we have, it's just the motions of chewing now...they tell me taste will come back and improve even when we finish the thrush meds next week).

Bedtime is getting earlier and earlier (except tonight) and involves a routine of baking soda/salt mouthwash to combat mouth pain, two more pills, and settling into my hospital bed with a yoga nidra meditation before I dose off...although tonight, I'll be adding KY Jelly in my nose before I hook up to the oxygen tank....here's to humor, rest and hopefully some moist nostrils by morning! ;-)

8 comments:

  1. Love you sweet Sarah. Sweet dreams.

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  2. Ugh, that doesn't sound very fun. I am sorry to hear about the dry nose, the thrush, the hotflashes, and any other discomfort you have to endure each day. I hope the nights are rejuvenating though.
    Take good care. xxxx

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    1. Feeling any better? I hope so. (((HUGS)))

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    2. Thanks Emilie! Not yet...it's been one of the worst weeks physically yet, but we're hopefully changing some more meds around Friday so I can be more functional and the weird side effects I'm dealing with will be a thing of the past soon....lol. Hope you are well!! :)

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  3. Oh no, so sorry to hear it actually got worse. Poor you. (((HUGS))) I hoping changing your meds has done the trick and that you will get some much awaited relief very soon. Take good care.
    P-S: I am doing well, thanks for asking.

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  4. I figured when you didn't write for so long that something was up. I am so sorry you had to go so soon Sarah. I hope you got to have a few good moments with your family before making that final journey, and that you weren't in too much pain when came the time to go.
    You are an inspiring soul Sarah. I don't know you, but I will never forget you. Rest in peace.

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