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Northern Lights: Sandcastles And Dexamethasone
By: Nancy Shamanna; Published: September 22, 2016 @ 10:45 am | Comments Disabled
Last month, my husband and I went to Vancouver Island to attend my mother’s 90th birthday celebrations. We had a lovely time at an outdoor garden party in the community garden where she volunteers. We teased her that she is tracking Queen Elizabeth, since they are now the same age. We had greetings sent out from the Prime Minister of Canada, the premier of British Columbia, and my mother's provincial representative (member of the legislative assembly).
The following day, we drove down to Parksville Beach to see a sandcastle competition. The sculptures made of sand were absolutely beautiful and built with so much attention to detail. Of course, the sand sculptures are subject to the elements (wind and rain) and will crumble and fall a short while after they are made. The sculptures were set well back from the shoreline itself, and surrounded by a temporary fence, which at least protected them from the high tides.
For some reason, the sand castles reminded me of my experiences with dexamethasone [1] (Decadron). I have been taking 20 mg of dexamethasone once weekly, in combination with Revlimid [2] (lenalidomide), for the past two years. I take the dex in the middle of the week since that works best for my schedule.
The combination of the two drugs is working well in keeping my multiple myeloma under control.
It seems, however, that my moods and energy surge up for a few days and then come down again, just like the impermanent sculptures of sand. In a sense, the dex builds me up, but then crashes me down again.
For me, the dex side effects have nevertheless been relatively manageable as long as I keep certain thoughts in mind.
Firstly, I get very talkative while on the drug. I am already quite ‘chatty,’ but the dex seems to enhance that tendency. I therefore try not to ramble on too much, both in person and online.
I also avoid doing certain things on my computer or other devices, such as downloading apps, or responding to requests to upgrade programs. Once I accidentally deleted many apps from a cell phone by clicking on the delete function by mistake.
I have also decided that I rather not drive much when I’m on dex since I worry that my reaction times might be affected by it.
The day after I take the drug, I am not very good at detailed work. I therefore prefer to dash around and do housework, get outdoors and garden, go shopping, or go for a long walk. I can get a lot of steps on my fitness tracker on a 'dex day.'
The physical effects I experience with dex include flushing of my face and neck and sleeplessness. I take a sleeping aid two nights a week to help me with the sleeplessness. I think that it not only helps me to sleep but may also decrease my irritability, and impatience, which I experience during my dex days and is difficult for the people around me to cope with.
I also puff up a bit from the dex and can have swing in my weight of five pounds within a week. After a while, I got used to that happening. At the same time, I try not to overeat while on dex, which proves to be difficult sometimes because the dex can make me hungry.
Last year during the choir season, I had an ongoing run of low-grade colds and sore throats. I was also hoarse and had to rest my voice for several weeks. I have read that these problems also can be side effects of taking dexamethasone.
After two to three days, the dex crash occurs. For me, it manifests itself as tiredness. I sometimes wonder, "Why am I so sleepy on a Saturday morning?" I just feel like I am getting lazy in my old age, but then I realize that it is the dex wearing off.
By the next day, it is as if the winds of change have blown the dex away from my system, and I have a few days of normalcy again until the next cycle.
What are your experiences with dexamethasone?
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The quotation for this month is an excerpt from the poem "Auguries of Innocence" by William Blake (1757 - 1827), an English poet, painter, and printmaker: "To see a world in a grain of sand and heaven in a wild flower, hold infinity in the palms of your hand and eternity in an hour."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here [3].
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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URL to article: https://myelomabeacon.org/headline/2016/09/22/northern-lights-sandcastles-and-dexamethasone/
URLs in this post:
[1] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/
[2] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/
[3] here: https://myelomabeacon.org/author/nancy-shamanna/
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