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#1 SpaceysChick


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Posted 07 May 2008 - 11:59 AM

Monday was my 5th treatment.

everything went just fine, and normal. I had the appointment at 9.30. For me this is early morning. This requires getting up at 8.30 at the latest. yeah... so not my idea of fun. especially when I didn't sleep so great the night before.

First bag of mesna went thru fine, then got the zolfran, and then the nice big bag of cyclophosphamide. About half way thru I started feeling a little fuzzy. my head just didn't feel normal. not really dizzy, and I wasn't nauseous. just fuzzy.

The last of the bag went thru and then the second bag of mesna, and then some saline. so yeah. Lots of fluid. plus drinking a diet cola, apple juice, and a 1.5 liter bottle of water. I'm supposed to get pleanty of fluids the day before, the day of, and the day after treatment, and boy did I ever.

I told dr. dames about the trip to Oregon later this month, and she gave me her blessing and was excited that I was finally able to get out and do something. She just wants me to be careful and stay warm. That isn't a problem. She also told me that I deserve to take naps. That with the cyclophosphamide, the lung disease, and scleroderma I'm going to be tired and that it was okay if I need to take a nap or two during the day. It's the way our bodies heal.

because of the fuzzyness I called mom to come and pick me up. I went home and just layed on the couch watching stuff on the television. I didn't feel well, just fuzzy, and then my body just hurt. and my skin felt weird. I weighed myself before going to bed. I had gained 10 lbs since I was weighed in at the doctors office that morning. and when I was weighed in there I was 5lbs over what I weighed the previous morning. to say the least... I was retaining water, badly.

Had a bad night. just didn't sleep very well Monday night. woke up once to go to the bathroom and then tossed and turned and then woke up every hour on the hour. 8.00 came around and I was in the bathroom yet again, this time to be sick. went back to bed and woke up again about an hour later with a nice headache.

spent most of the day yesterday sleeping on the couch. Did venture out to get my car, but then ended up on the couch sleeping the afternoon away, with 2 children playing, a television on, and mom and Chelsea talking.

Went to bed... late again. but ended up sleeping for 11 hours. I LOVE being able to sleep like that. I feel so much better when I get out of bed. sure I sleep most of the day away, but woke up refreshed and even changed my sheets, made my bed (the aerobic workout), and emptied one of the 2 laundry baskets that were sitting in my room. Sure, now I have to put the clothes away that are folded nicely on my bed. but at least they aren't in a basket anymore and I feel like I have actually accomplished something today.

so all in all, not a bad few days. Have only been sick the one time, and am hoping that I'm not sick this month. but won't know that for sure until next week when it usually hits me.

#2 Sweet


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Posted 07 May 2008 - 12:16 PM

Hey Sarah,

Thanks so much for the great update. Sounds like you are going through a lot. I really hope these treatments help you. Hang in there and YES please do take those naps!!
Warm and gentle hugs,

ISN Support Specialist
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#3 Member


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Posted 07 May 2008 - 12:38 PM

Sarah, Thank you for letting us know whats going on. Please do take the naps. Naps are great! I hope your treatments go well for you! You will be in my thoughts!

#4 Snowbird


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Posted 07 May 2008 - 01:40 PM

Hi Sarah

It's good to hear from you, glad you let us know how things are going for you. It sounds like you've had quite a go of it! With a little luck, maybe you'll get a good surprise and those treatments will start working....and then you won't get sick (as usual) next week :) .

I hope you get lots of that much needed rest now.
Sending good wishes your way!

#5 jefa


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Posted 07 May 2008 - 11:31 PM

Thanks for the great detail on a not so great time of it for you. I do hope it will eventually seem like it is worth it. I liked your description of the aerobic workout. :D
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#6 Karenlee


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Posted 08 May 2008 - 01:28 AM


Well what a way to start the week eh? Glad you were able to sleep a good full night. 11 hours! I'd kill for 11 hours straight :D


#7 SpaceysChick


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Posted 08 May 2008 - 10:06 AM

Thanks for all the comments! It was a post that I did on on my blogs, and I haven't posted anything here in such a long while and wanted to update you all on what was going on here. Sorry if it was a little too detailed for some of you, but yeah. I can get going. lol.