We had a bit of a scare this weekend due to an odd symptom Ana experienced on Friday. It was a snow day and I took the girls to Fiber Flame in Woodstock to meet up with one of Ana’s friends. Fiber Flame is a studio space where you can make all kinds of crafts and projects. It’s SUPER fun. I’ve posted about it in the past because Ana made me a really sweet notebook when we thought I was going to be her donor.
Ana chose to make a picture frame and she was working hard on decorating it with paint and marker when her hand cramped. It was not a normal cramp – the muscle contracted so severely that she couldn’t straighten out her hand for several minutes and it was so painful that she cried. It passed after about five minutes and she started painting again, but then it happened again. This is the third or fourth time her hand has cramped to this extent so I was really worried it was some kind of nerve-related side effect from one of her medications. I emailed Dr. Martinez who told me that this type of cramping can happen with an electrolyte imbalance and that if it got any worse, we should take her to the local E.R. to get her electrolytes checked and get I.V. fluids into her.
Hand cramping! Can you give me a damn break? How am I supposed to relax about anything if my suspicion that a cramped hand was actually validated by my worst fear – if it happens again, she may end up in the E.R. I really miss the days when I worried about every little thing and it was nothing. The good news is that it didn’t happen again. We made an executive decision to stop the diuretic that Dr. Martinez had restarted on 3/7. I did email and ask first, but it’s the weekend and we’re mostly on our own. Ana had already stopped this diuretic for a week when her potassium went back up and since the cramping happened the next day, it seemed to make sense that this may be what was causing it. She’s also been on Lasix, which is a very potent diuretic and we didn’t stop that. Her weight also went down 3 pounds when they put her back on the second duretic (that’s three pounds in 2 days…)
In spite of this underlying worry, we had a good weekend. I took Emily to a Karate demonstration in New Paltz with her dojo, Fighting Spirit Karate. I pretty much spent the entire day at this event (not including her normal Saturday morning karate class which she also went to). That’s three straight hours of karate for Emily. I was exhausted just watching her. Then I actually managed to drag myself out the door at 9:30 to see a comedian at Market Market in Rosendale on Saturday night. I couldn’t believe I was actually out past 10 on a Saturday night. That felt like a major accomplishment. The comedian was even funny – so double bonus!
And today was just gorgeous, so we spent some time outside soaking in much needed vitamin D and drawing with chalk in the driveway. Actually, Ana occupied herself helping Jim in the garden and I did a bit of cathartic chalk therapy.
That’s what my driveway looks like now. My neighbors must be so pleased. But, in all seriousness, I am feeling kind of depressed. I think it was the hand cramping/E.R. thing. It’s just such a crushing burden – this CONSTANT worry. I am also getting caught up in what can only be post-traumatic stress from the entire ordeal. I sat down on the floor of my office to file a bunch of paperwork today and just started crying. It was all those medical papers – test results, EOB statements, school assignments and letters – all of it vying for my attention as though it was actually important. As though Ana might not have to go to the hospital for a hand cramp or a low grade fever. As if I can actually pretend to be a normal person filing paperwork and not the mother of a child with cancer.
Well, what can I say? There’s a dark place that’s never quite beyond my line of sight and sometimes I stumble into it. It’s not helping that I’m not getting much sleep. Those damn cats have taken over the bedroom and they don’t respect the fact that I’m not nocturnal. Their newest game is for one to burrow under the covers with me while the other one attacks her from the highest position in the room – literally flying across the bed to land on top of the blanket where she’s hiding. This, of course, is difficult to sleep through. Most nights I make it until 3 a.m. in the bedroom before stumbling into my office to sleep on the futon couch – which really isn’t a couch. It’s more of a cot and it’s kind of like sleeping on extra-fluffy slab of cardboard.