Living with Scleroderma

this is nothing but a curve ball

Chemo #8 and #9

on December 2, 2012

Chemotherapy #8
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Chemotherapy #9
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I thought i was starting to get the hang of my cytoxan treatments. I was only feeling nauseous for a couple of days after the infusion. However, my 9th infusion actually threw me for a loop. I wasn’t as tired on the day of the chemo, as I normally would. The fatigue hit me the night of the 2nd day and I was nauseous and vomiting for about a week. I had an anti nausea medicine my doctor prescribed me but it makes me dizzy and makes everything I look at blurry. I couldn’t take it since I was still going to work. I had to tolerate the nausea until my doctor prescribed me another type of medicine.

We saw Dr. Furst again 5 days after chemo #9. He looked at my last PFTs and said that my results look “ENCOURAGING.” Yes, he said encouraging!

Some days are still better than others. And I think the cold weather is affecting my cough, reynauds and joint pain even more, but I’m either learning to manage them more or just ignore them.

I don’t like days when I just feel so tired or my body is so stiff or in pain that it’s so difficult to get up. But for the most part, I look at my kids and see that they still need me. They need me to take care of them, play with them, teach them and spend time with them. And I can’t do that lying down. I need to keep pushing myself a little bit more everyday to show my kids that this disease will not take away their time with me while I’m still around.

Anyway, Dr Furst and my rheumatologist agreed to put me on another set of infusions, just two more in between Cytoxan treatments. It’s called Rituximab. It’s another medication that is used with patients with Hodgkins Lymphoma that they say may help scleroderma.

Am I looking forward to more chemo and doctor visits? Ehhh not really, but I’m grateful that there are now more treatments available to help people going through a chronic illness like me.

I try not to live a normal life, but an extraordinary one!
You shouldn’t either …Normal is just plain boring! =D

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