Monday, January 19, 2009

A little update from Susan:

Since last he wrote, Dan has experienced a similar level of discomfort from the mucositis (mouth sores), but it is improving and he's figured out a way to tolerate it. The latest challenge has been dealing with persistent fevers. As a side note, thanks to our friend Celsius, the unit of measurement for temperature used here at Sloan, I can now translate temperatures to approximately what they should be in Fahrenheit...one of the many skills I have acquired.

The major event today was the removal of Dan's mediport, the device that's been used to "plug him in" to his various IVs for the past year. Apparently the infection that's causing these fevers feeds off of plastic implants. Their hypothesis is that it's removal will starve that particular bacteria and the antibiotics will be able to do their job since he still has no white blood cell count. Unfortunately, that means that for now Dan will get everything he needs through "peripheral" veins (i.e. the arm or the wrist). Ouch.

If you haven't noticed, I am learning a lot about what nurses and doctors do here at the hospital, as well I should since I certainly spend a lot of time here. A few of you have asked me if it's anything like ER or House, and my answer is, well, not quite. Although I try to provide quick wit and dramatic monologues for the staff, reality is never quite as eloquent or straightforward as TV...but never fear, I am taking notes for next year's role in the latest medical drama.

I will now sign off since this is Dan's blog and he'd never write so much. I am amazed at how many of you keep up with this blog. It means a lot and it helps. Thank you.
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5 comments:

Jack Jodell said...

And thank YOU, Susan, for all you do and for the strength and support you provide. You are a remarkable woman. Both of you keep up the great work, and continue praying that relief will be right around the corner. You're both a LOT tougher than you may give yourselves credit for, and all your family and friends remain solidly behind you. Our new President likes to remind us that "yes we can"; I say, "YES, YOU WILL!"

January 21, 2009 at 3:32 AM
alan said...

Hey guys. I wanted to check in and send some warm wishes your way. (Think Bahamas, warm) As I write this I am sipping on some Pau D'Arco bark tea, which my mother bought for me recently. I had bronchitis throughout December and this stuff is known to boost the immune system. Anyhow, as I read about it, I learned that Paul D'Arco is supposed to reduce the symtoms of chemotherapy. Have you guys heard about or tried this bark tea? Just thinkin' about you, Dan and Susan. Much Love, Al

January 21, 2009 at 5:19 AM
Jim said...

Hi Dan & Susan:

I can assure you that the mucositis will get better as your white cell counts come back. Unfortunately, patience is often in short supply when you don't feel good. I'm not surprised to hear about the infection starting at the port - I've heard of it several times down here on the 8th floor. You've had yours a long time, Dan, so it makes sense.

Stay strong, both of you. It's a long road - just keep looking ahead! Best wishes for you,

Jim Greene

January 21, 2009 at 9:54 AM
Meret said...

Hey Susan, about the Pau D'Arco tea, I use it myself because it's also supposed to be good against fungus/candida and that sort of thing. But I must say that it's an acquired taste. If I think of it as medicine it tastes fine, but if I think of it as herb tea, not so much. Sweetener helps.
Thinking about you both and I'm with Jack Jodell--you will get through this and come out into the rest of your lives. Love, Meret

January 22, 2009 at 7:09 AM
alan said...

Oh, I recommend adding a large dollop of honey to any Pau D'Arco tea. Without sweetener, well, it tastes like tree bark! And, actually, WITH honey it still kinda tastes like tree bark. :) But it's another thing to try out and see if it adds a layer of comfort. Keep it going strong, guys.

Love,
Al

January 22, 2009 at 11:18 AM

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