Day by Day

So perhaps my celebration of remission was a bit premature. I’ve been told I’m in remission, but that my disease was essentially so severe prior to Cytoxan, that I will need to stay on immune suppressing drugs…forever. I start Cell Cept on the 17th of this month. I’ve taken it before, with some nausea, but the hope is that my immune system is healed enough to tolerate it now. I’m still optimistic, albeit I remain guarded.

I’ve gained 40 pounds since the start of chemo, and I’m planning on losing some of the weight, and replacing some of it with muscle. Today I ate broccoli, carrots, and cauliflower, without issue. I’m still lactose intolerant, which wasn’t a huge shock, but that’s fine. My neurological issues persist to some extent, and I’ll be having an in home 3 day EEG to figure out if there is any obvious underlying abnormality in my brain. There have been some issues with my heart rate and blood pressure, so my neurologist has suggested not over exerting myself, or overheating.

The neurologic issues have been the most aggravating part of everything. I had convinced myself that it was all tied into my Behcet’s, and that once I finished chemotherapy, I would have no lingering symptoms. Now, granted, I just finished chemo three weeks ago, and my last seizure was one week ago, I’m still frustrated about what my neurologist said this past week. Simply put, he doesn’t know why I’ve continued to have break through seizures, but the suspicion all along has been some sort of autonomic nervous system malfunction.

I still struggle with hyperactive reflexes, though perhaps struggle isn’t the right word. I still have hyperactive reflexes, which is really awesome in terms of pursing a diagnosis. So many neurologists and ER doctors have suggested that I have pseudo seizures, and that my issue is psychological. You can’t fake reflexes…they’re literally reflexive. Prior to and following my last seizure, my reflexes were completely spastic. Simply touching my legs would send my muscles into an all out spasm, and they’d lock down. It’s hard to explain to someone what it’s like, other than you literally lose control of your limbs. I was really afraid I’d end up unable to walk like I did a few months before starting chemo.

So yes, I’m a remission of sorts. I can eat. My ulcers and other lesions are gone. I’ve begun going to the dog park, and hopefully I’ll be heading out for fun in the near future. These things are all happening…and yet there are concerns, too. I’m thrilled my hair started growing again, but sad that it is only an inch long. I worry over water consumption because I don’t really know what is triggering my seizures, or if I’ll be okay on my new medications. Each ache, pain, or exhaustive day, makes me worry remission isn’t here, or worse, that I’m heading towards a relapse.

There is so much unknown about Behcet’s, and even less about my neurological status. I’m happy, but I’m terrified, too.

Day by Day

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