Thursday, April 03, 2008

It's MY Sandwich!

Loopy here from a "basal ganglia stellate procedure" to help knock out my post-herpetic neuralgia. I may have to do this several more times. Sadly, after the procedure today I can't really talk or swallow, so taking my mom to my favorite deli was great for her, but my sammy is in the fridge, uneaten. I hope Brian doesn't eat it.

Also, my goal is to be taking fewer medications, but the pain doctor wants to increase the Lyrica, which is one of the ones that has a drowsiness warning on the label. I'm never going to be able to drive again. Blargh.

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Thursday, March 20, 2008

Hi-Ho, Hi-Ho, It's Off to Work I G---what? What NOW?

I went back to work Monday, March 10 and was happy as a clam to not only be out of the house, but to once again be useful to society. Unfortunately, by the evening my neck/chest/shoulder area began to burn and itch so badly that I cried at my appointment the next day. So I didn't have infusion--they can't treat me with chemo until the skin condition clears up; instead, I went back to the dermatologist to get more of the giant blue horse pills, many boxes of lidoderm patches, and a medication called lyrica (used to control seizures, treat nerve pain and fibromyalgia). From there, I was referred to the pain center to see about getting something called a "nerve block."

Nobody told me to fast or have someone else take me to the appointment, so they could not actually do the block that day.

The doctorlet took my health history and consulted with the actual doctor, who decided I should be on more of the lyrica but should spread out the dosage over the day.

I thought this was a little weird, as the medication label indicates that I should not operate machinery or drive until I knowhow this will affect me...I was also to take Pamelor (since discontinued in light of my extreme fogginess and impairment), which boasts the same warning, and ultram (same warning) instead of Ibuprofen.

Loaded up with so many medications--my arms feel noodly and I was/am definitely in a state of "keep Janet from driving and don't let her make important purchasing decisions right now."

I tried again on Tuesday to have infusion, but Dr. Hayes wants to continue to delay the chemo. It was suggested to me that I not try to return to work and that I should probably not plan to go back for another four weeks or so.

I'm worried about my medical condition right now, but having to stay home again when I was so happy to feel like things were getting back to normal is the hardest to bear. I don't really know if it will be four weeks, either, because assuming my idiotic nerve issue gets taken care of, there's no guarantee that I will immediately tolerate the chemo treatments well, and sometimes the follow-up appointments can be unpredictable.

I went to the dermatologist yet again--they attempted to do another scraping test to see if I need a third course of an anti-viral (tests were inconclusive, but it is the attending's opinion that the lesions do not look active, they look like they are healing). The doctor I saw this time at the derm office remembered me--"Wow! Your face looks great!" She is the one who treated me for my horrible steroid-induced acne.

I should be grateful the skin on my puffy moon-face looks great.

The skin on the back of my head and neck is very broken down and I have wound care products to cover the worst of it.

The very bad thing (aside from being in ridiculous discomfort from the nerves in my neck and shoulder all going BLEARRRRRGHHH!) is that without chemotherapy, my liver function is certainly not improving. It was Dr. Hayes' and Lita's opinions that Adriamycin was no longer working for me at the time I had my brain episode. So the plan is to switch me to Xeloda and Gemzar. However, one doesn't do chemo while doing whole-brain radiation. And one doesn't do chemo while suffering shingles. And one doesn't do chemo when suffering a re-flare of the shingles that's even worse than the first time around.

I had a CT scan recently, and it occurred to me that Lita has not given me the results, which is a little unusual. I am worried about what my liver is doing. I really need to be on chemo, and haven't been for about two months. Naturally, other problems are occurring as a result.

So if anybody needs me, I will be at home shaking my impotent fist at the heavens and watching bad daytime tv. I am itchy, bloated, have swollen ankles, and my liver and spleen are probably busy applying for their own zip codes.

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