Provigil

I started my Provigil test Friday morning.  I took one pill (200mg) around 8am.  I chose Friday specifically because it follows my Thursday pilates session and ever since I went back to the gym I've needed a 3-4 hour nap the next day.  So, I took the pill and I avoided caffeine all day to keep it honest.  Usually I feel the first crash of the day around 11.  I coasted right through that.  Bob and I went down to the garage and took an inventory of all the wedding supplies that have arrived (three more minor things to buy, and then I think we're done) and then repacked them so they will be easy to take up to the zoo next week. 

I came upstairs to work on some other wedding stuff and got so into it that I completely forgot to eat lunch.  I noticed that and decided to get up and eat something after I finished this one thing.... and looked up again and it was 90 minutes later.  I got a lot accomplished.

A friend came over to have dinner with us and watch some TV.  I usually go to bed when he leaves.  I did go to bed last night, but I read.  And read.  And read.  At midnight I started taking .5mg Ativan, and I ended up taking four of those (totally safe per my doctor, I sometimes take more than that on chemo days) before I fell asleep around 3:30 am.

Woke up at 8 this morning, felt bleary from lack of sleep, but I don't think it's a hangover effect from the drug, just that I didn't sleep enough.  So I took half a pill this morning and went out to breakfast and then did a bunch of shopping all by myself - Trader Joe's, Bed Bath and Beyond, Avenue, Walgreen's.  That's more than I've attempted in a long time. When I got home my body was exhausted, but I've spent the afternoon doing more wedding stuff online and reading and never felt like I needed a nap.   It's almost 7 now and I don't feel particularly tired.  We'll have dinner and I'll go to bed at the usual time and see what happens.  Experiment over.

The best way to describe what it feels like physically is that I feel like I drank too much coffee, but not jittery.  It's unpleasant enough that I wouldn't want to do this daily, but I think it will work fine at the wedding next week.  It did feel like it took a couple of hours to kick in, so I may get up and take it earlier - maybe 5 or 6 am and let it wake me up.  I could definitely see taking a half dose to do things like fight jet lag or handle marathon conference days.  

The hyperfocus thing is interesting.  I definitely got a lot of stuff done despite my usual distractions, but when I don't have something to focus on I feel kind of scattered. 

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In other news, I'm officially out of the last round of chemo on Tuesday.  My hand still hurts and is discolored from the infusions.  I plan to keep updating the blog, but those updates will be fewer and farther between as I shift into long term care - bloodwork every 90 days or so and then prep for surgery in the fall.  My next oncology appointment is July 2. 

Pretty boring, in a good way

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

Done. Sort of.

My final chemo infusion was yesterday and it didn't go great, but that's been completely par for the course the last few months.  I think really what it comes down to is that while the nurse in the practice who manages infusions is great in all other respects, she's very used to dealing with ports and is just as good at setting up IVs.  After that first infiltration incident, each time she's tried both elbows (which the lab techs get every time now since I've been really conscientious about being hydrated) and fails and then goes into the back of my hand, and has to try multiple times to get that.  It is really painful and it continues to hurt through the entire infusion - burning and throbbing.  I started taking Ativan before going in to see her the last couple of times, and yesterday when we got to my hand again and I was crying in pain and frustration I said screw it and took some vicodin too.  It knocked me on my ass, which was awesome.  Those are two drugs you don't want to mix, but I knew the dose was safe because I'd been given more than that in a hospital setting before.  I hope I don't ever need to do that again though. 

So I went back today for my neulasta shot and did an abbreviated (no energy) pilates session and saw my shrink.  We talked about possible short term stimulants for me.  Not for daily use, just to help get me through the wedding.  I won't be recovered by then, and I am really worried that I'm going to shoot my wad at the rehearsal dinner and then be a zombie at the wedding itself. 

My anemia is bad, but not bad enough to trigger an automatic transfusion.  Shrink and I talked about adderall and provigil, but he wants my oncologists opinion before we move forward with either one of those, so I'll send her a note asking about that and also let her know that I think a transfusion would take me far enough to not need either one of those things and would be my preference anyway.  We'll see what she says. 

I expect to crash hard tomorrow and through the weekend.