A Pretty High Low Point

I had my first nadir visit yesterday.  For those of you (like me) who had never heard this term before, it means low point.  At this time, approximately 10 days after chemo, blood counts (WBC, platelets) are expected to be at their lowest.  If they fall too low, there starts to be concern about increased risk of infection, bleeding, etc., and there may be extra steps you need to take, so the main reason for this visit is to check on that.

Good news - my levels were normal!

In addition to getting blood work done, this visit was a chance to discuss any symptoms, issues, or questions I've had.  I had several items on my list to go over, but all things considered, I think I've been doing really well over the past week.  I have certainly been tired, so there have been lots of naps.  My appetite is not quite normal, but I am eating fine.  I've been achy, but haven't had a fever.  I've had a perpetual dry, slightly bloody nose, but nothing that is cause for concern.  And my energy comes and goes pretty unpredictably, but I've had a decent amount of it.

Wednesday was rough - it was the first day off of prednisone, and it was absolutely like hitting a wall.  I was completely exhausted, and even napping seemed to make me more tired.  Yesterday was an improvement (naps actually helped) and today was definitely better (0 naps taken!).

The most frustrating thing has been the brain fog.  It was like my brain was just not processing things correctly.  I would get distracted very easily, and simple things could take a long time to make sense.  I'd heard enough about chemo brain to expect this at some point, but I was really hoping it wouldn't show up so soon!  Fortunately, it has cleared up considerably in the last couple days, and I feel like I am mostly back to normal.

One thing we need to keep an eye on is my weight.  As of my visit yesterday, I had lost 7 lbs in the last 9 days.  Normally I would not mind at all, but we definitely don't need me losing strength and making this whole process harder to get through.  One of the things I was told before starting was to focus on protein and calories, and I have been trying to do that.  I feel like I have just been eating all the time, but it looks like it's time to start loading up on the most calorie-dense foods I can!  I am a volume eater, so this is totally opposite my normal eating strategy ... which means we don't necessarily have the best foods in the house to fulfill this need.  So in an effort to get more calories in me, my very wonderful husband went out and bought me double chocolate muffins, chocolate and cinnamon sugar donuts, and almond horns.  And we had pasta tonight.  And we're having pizza tomorrow.  I guess there are some perks to this after all!

The most important discussion piece from my appointment yesterday was around changing up my meds for the next cycle.  Instead of Zofran and Compazine, which seemed to do nothing, they are looking at keeping me on the Kytril and adding in either Emend or Aloxi.  I had come across Emend while doing some research on nausea medications and it sounded like a good candidate to me:  Kytril is supposed to work by blocking the nausea/vomiting signal from the stomach, while Emend is supposed to block the signal from the brain and is used in conjunction with a drug like Kytril.  They have to check what my insurance will cover, but whatever I get should be better than what I got the first round.  In addition to trying different meds, they also scheduled me for additional hydration the day after chemo just in case.

We are not quite 2 weeks in, and I am both exhausted and optimistic.  It's hard to think about this going on for 16 more weeks, but on the other hand, we've already learned a lot that should help the remaining cycles go more smoothly.  I know to be prepared for the mental fog now.  I can anticipate the prednisone crash.  We'll stock up on different foods than normal.  If we can get the medications right and avoid the nausea/vomiting, I think we'll be in good shape.

Now I am hoping for a good week full of energy next week before we start again.