Tomorrow will be two weeks since my last infusion. My energy levels are still terrible, but otherwise I'm doing pretty well. I think I've worked through the last of the bone pain from the neulasta shots, although I still feel a deep bruise in each arm where I got the last two. I expect that will disappear in the next month or two.
After several discussions with my psychiatrist and my oncologist we decided on a mix of dexamethasone (the steroid I took along with my taxol infusions) and ProVigil. I tested the steroid last week and it came close to doing what I needed. I haven't filled the ProVigil prescription yet, but I'll get it this week and try on Thursday or Friday. In the mean time I'm taking iron supplements daily and trying to pace myself.
At this point I can sit on the computer all day and not need a nap, but any kind of physical expenditure is hard and I get tired fast. Standing still is harder than moving. We've been doing a bunch of prep work for drinks at the wedding and I have to take a break and sit down every few minutes. Grocery shopping is exhausting, I think it might be the worst because it's walking for 15-20 minutes and then standing still in a line for five or ten. Now Bob goes with me and I usually abandon him at the checkout and go sit in the car. I have been keeping up with pilates but let weight training go for the last couple of weeks. Doing the work itself isn't that bad but it's taking me a couple of days to recover from the effort and I have too much other stuff to do around the wedding to risk being too tired to accomplish it all. I'll try again next month when we're back from our trip.
I'll do another round of bloodwork and see the oncologist on July 2, which is when we'll figure out what my long term maintenance plan is going to be. I expect it will be a mix of bloodwork every few months for the next year and a couple of PET scans to look for metastases. If everything looks good on July 2 I expect that we'll start the paperwork so I can return to work
After several discussions with my psychiatrist and my oncologist we decided on a mix of dexamethasone (the steroid I took along with my taxol infusions) and ProVigil. I tested the steroid last week and it came close to doing what I needed. I haven't filled the ProVigil prescription yet, but I'll get it this week and try on Thursday or Friday. In the mean time I'm taking iron supplements daily and trying to pace myself.
At this point I can sit on the computer all day and not need a nap, but any kind of physical expenditure is hard and I get tired fast. Standing still is harder than moving. We've been doing a bunch of prep work for drinks at the wedding and I have to take a break and sit down every few minutes. Grocery shopping is exhausting, I think it might be the worst because it's walking for 15-20 minutes and then standing still in a line for five or ten. Now Bob goes with me and I usually abandon him at the checkout and go sit in the car. I have been keeping up with pilates but let weight training go for the last couple of weeks. Doing the work itself isn't that bad but it's taking me a couple of days to recover from the effort and I have too much other stuff to do around the wedding to risk being too tired to accomplish it all. I'll try again next month when we're back from our trip.
I'll do another round of bloodwork and see the oncologist on July 2, which is when we'll figure out what my long term maintenance plan is going to be. I expect it will be a mix of bloodwork every few months for the next year and a couple of PET scans to look for metastases. If everything looks good on July 2 I expect that we'll start the paperwork so I can return to work
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