Can You Say Radiation Myositis?

I'm sorry I haven't posted more, but I have really been laid up this week, mostly with pain in my left leg in the area where I had radiation. I've also had the worst constipation I've ever experienced, despite taking stool softeners, laxatives, eating prunes, drinking fluids. I was reluctant to take my pain medication, Oxycodone, as it causes the constipation. I was getting cramps from the laxatives and had intense bloating (you know how cranky that makes us gals). I had been told to take Ibuprofen sparingly and try to stay off it for one or two days a week.

Last night I was in tears on the toilet. I had not shat for four days. My leg hurt so bad that Robert had to help me get up and downstairs and into bed by picking up my leg up for me. I took some Ibuprofen early in the day even though it was supposed to be a day off, but it had already worn off. I cried to my husband Robert, "I'm in so much pain I can barely walk, and I'm full of sh_t!" So he gave me some more Ibuprofen, and we found a solution (by Mr. Fleet) to move the concrete lodged somewhere in my intestines. I was grateful we didn't have to use dynamite!

I had an MRI today in Grand Junction, the first one I've ever had. We found the cause of the leg pain, which is very rare - "radiation myositis" induced by recall phenomenon. Apparently, gemcitabine (Gemzar) can cause a recall reaction of radiation side effects, even ones not experienced during the radiation itself. Dr. Bergen said there was a remote possibility I'd get the radiation sunburn once I started back on Gemzar. (I didn't ever get the radiation "burn, nor sore muscles.) There have been so few cases of the inflamed muscles from radiation recall, they're not exactly sure how to treat it. I'm going back on steroids to reduce inflammation. (Look out, Robert, I'll want to work on 17 projects at once, plus rearrange all the furniture in the house.) I can stay with the Oxycodone and have a new Rx for a different laxative. And I can stay on Ibuprofen as described above.

Needless to say, we were so relieved today to find out that the pain was not the result of the cancer spreading. Dr. Bergen and Nurse Amy were very happy. I had been feeling so bad physically that I was afraid/depressed that I'd never pull out of it, but now I have hope again. We are planning to go on a trip later this month to a book show in Austin, Texas and to see Robert's family in Mississippi, and I think we'll be able to do that now.

I didn't bowl this week, and it looks like I may have to give that up. The pain really came on last weekend after I bowled on Friday night.

So that is it for now. Thank you, God! I'm going to try to get some sleep despite getting an infusion of steroids in my port today. Thanks to my husband Robert who has taken such good care of me when I've been so incapacitate these past few weeks. You rock, honey!

Just up here in Colorado looking forward to Spring!

Sincerely, Caroline