Sunday, July 1, 2018

Independence

I'm here to tell you that going from SOME steroids to NO steroids sucks.  It sucks a lot.  This has been the worst of the steroid step-down yet!  This week, I have had fevers (up to 101 F; oddly enough, they mostly start in the evening and are gone by morning; I'm probably the only one who has been sleeping under two blankets in this hot weather), fatigue, swollen joints (particularly knees, hands, and feet), and nausea.  Oh, and allergic reactions!  The steroids have been keeping all of my allergies at bay, including my normal allergies to pollen, but now that the steroids are gone my immune system is waking up to all sorts of insults.  In fact, my body has decided to be allergic to sunscreen, so I have itchy red bumps on my arms.  Needless to say I will soon be the proud owner of a long-sleeved swimsuit. 

Today I felt quite a bit better, finally (my last steroid was Monday morning; I felt mostly fine on Tuesday; the crummies started in earnest on Wednesday).  I even accompanied the kids to the pool today.  Nay, I DROVE them to the pool.  Because I can drive now!!  Although the process of getting off the steroids sucks, being off the steroids doesn't suck.  Huzzah for driving! 

When my youngest, E, found out that I was no longer taking steroids, she ran through the house shouting, "Mom can drive!  And eat pie!"  I presume the latter part of this is because when I first started taking the steroids, people were bringing us pies, but then Dr. Oncologist told me to eat less sugar because steroids interfere with the body's ability to process sugar.  So I quit eating pie.  And E thought that that was a big bummer for me.  She has a big heart. 

You might be thinking, was it weird to drive after 6 months of not driving?  Because I thought it was going to be weird.  But it wasn't at all!  I kinda spooked myself a bit--I checked the mirrors approximately a bazillion times before backing out of the driveway, I was super cautious at stop signs, etc.  I didn't want to screw up and lose driving privileges!  But beyond that, it didn't feel unnatural to be behind the wheel.  The weirdest part is going to be getting back into the habit of driving.  That is, we are all used to me not driving, so Ian continues to nominate himself for family errands.  But I could do that! 

It was at my appointment with Dr. Oncologist on Friday that she told me I could drive.  Also at that appointment I learned that I can quit taking the prophylactic antibiotic (it was preventing a particular lung infection--mission accomplished) and doing the 4-times daily anti-fungal mouthwash (this was preventing a thrush infection--mission accomplished).  HUZZAH for no more antibiotics and gross mouthwash!!!  I swear that when she prescribed the antibiotic, she told me I'd have to take it for 6 months.  Needless to say, I didn't argue with this turn of events!  She did say that I'm to keep taking the valacyclovir, which is to prevent shingles.  But there's really no side effects to taking that, so it's okay. 

Also at Friday's appointment, I got scheduled for a bone scan.  Bummer!  This is because I have a sore spot on my chest wall.  There's no bump or redness, just a bit of soreness.  It started about a week ago, and I figured it was related to coming off the steroids (its adjacent to an area of increased fat deposition).  This chest-wall pain has happened once before, and after doing the scans and seeing that there was nothing wrong with me, I was told that it was probably just my screwed up nerves (from the mastectomies and radiation) and I should rub the area to desensitize the nerves.  That worked.  The screwed up nerves aren't doing me any favors now, either, because I can't tell exactly from whence the pain is originating.  I think it's superficial, that is, originating in the skin and not the ribs, but I can't be sure.  Dr. O therefore ordered the bone scan to rule out an explanation for pain in the ribs.  This bone scan will be on Tuesday and will take 3 hours (inject me with some crud, then scan me 3 hours later).   I'll get the results at the end of the day on Friday. 

Happy Independence Day, everyone!  I will be celebrating my independence from steroids! 

4 comments:

  1. I understand where E is coming from in thinking lack of pie is a hardship for you. You should see how happy you are when you eat pie. Its one of my favorite things.

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