I hope your week (and new month) is off to a smooth start! Today has had some ups an downs, but I am remaining optimistic. Last night after I wrote my blog post, I unfortunately required an epinephrine injection due to some stridor (noisy breathing indicating swelling). Luckily, I responded to just one dose quickly, so I was able to stay put on the telemetry unit. However, since there were no new triggers, this was an indication that my steroid dose was being reduced too quickly. Today, the hospitalist I had from my last stay two weeks ago returned. She is on top of her game, and has consulted with my mast cell specialist. Since she is familiar with my case and symptoms too, she is able to identify when I am not at my baseline.
In addition to the small hiccup last night, this morning I woke up with a lot of discomfort, mostly burning and itching of my skin. I am still on around the clock Benadryl, and will be likely a few days past discharge, but these symptoms are relentless, confirming that I needed the higher dose of IV steroids. The hospitalist decided to re-increase my steroids, to prevent anything from worsening, and to keep me more comfortable. It was clear that my body needs more time to calm down. This of course is extremely frustrating, because I really want to go home, but this obviously is something that can not be rushed. We have to let the mast cells wreak their havoc, and do so safely.
As a result, I will be stuck here for another couple of days. We still need to switch me to oral steroids, and ensure that I don't have any more "rebound" reactions. In the mean time, it is just a waiting and resting game. In addition, we made the decision to increase my Gleevec (oral chemo) medication while I am here to monitor for side effects and see if it helps. Luckily, Gleevec is a targeted chemo drug, and this is only a dose increase as opposed to a new medication entirely, so I shouldn't experience many negative symptoms.I am still trying to force myself to relax more, but I also use my productivity to try to distract myself. Since I was so uncomfortable this morning, I worked like crazy and finished off one of my two online courses I am currently enrolled in, tutored, and finished revising a reflection paper for my other course. It felt good to get all of those things done.
Even though this has been a bump in the road, things are still moving in the positive direction overall. My mobility issues have finally resolved (mostly), so I am taking regular laps around the unit. Physical therapy will continue to work with me to make sure I don't lose too much strength while I am here, and ready to handle the stairs at home without over exerting myself. I also am able to shower on this unit, which really helps me feel more human throughout this whole experience. I put in requests for a therapy dog visit and art cart visit, so I am hoping that those will help as well. I am keeping track of the experience in my Beads of Courage journal, which I have discussed in earlier blog posts. It sucks to have to add any beads at all, but again is something that helps cope with the more emotional elements of this whole experience.
Heading off to try to get in as many hours of sleep as I can. Thanks again for all of your love and support.
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