On the 19th of December I had my second round of Cytoxan, which wasn’t enjoyable, but I survived. By Christmas I had a nasty chest cold. The pain had actually gotten so severe, I had to be evaluated to make sure I didn’t have a blood clot. I was also worked up, and monitored for pneumonia, because of some fluid noted in an x-ray of my lungs. Yes, I was in the ER…twice…one time was on Christmas Eve. My primary care doctor treated me for a dislocated rib, courtesy of my cough, and for pleurisy.
On the 1st of January I was determined to have a flare free 2017, but couldn’t ignore the fact that I hadn’t really felt well since the 19th of December. Sure, I’d had chemotherapy, but had it worked too well…yet again? After steadily f feeling worse throughout the first few days of January, I finally caved in and emailed my doctor, worried that I’d either developed an infection, or that I’d begun to have a flare. She hadn’t put in for repeat blood work, and suggested that I head to the ER to make sure I didn’t have an active infection brewing. Begrudgingly I donned a mask, called a Lyft, and went to what I had hoped would be the last crowded ER near me.
If only hopes were guaranteed realities, how happy we all would be!
The ER wasn’t crowded, but I’d placed a bet on a smaller ER, with one doctor, and he was not into the idea of treating patients expeditiously. Worse? My condition and treatment protocol put me into reverse isolation procedures…only they had nowhere to isolate me. I sat and waited in a sort of out of the way section of hallway for several hours before they had to give up, and place me in a room with patients who had the flu, just to process me in and out with the doctor. Without even seeing the doctor, they’d ordered a host of lab tests, which I was fine with, and yet another chest x-ray, which I found annoying. I’ve had at least 6 chest x-rays in the last two months. It’s becoming a bit ridiculous.
Anyhow, the blood work was annoyingly good. While I’m happy I don’t have an infection, my white blood cell count isn’t as low as one would expect someone on Cytoxan to experience. This is kind of a toss up between aggravating and relieving. I’m happy that they didn’t over medicate me, because I don’t want to murder my ovaries, or bone marrow, but on the other side of things, I am definitely having a flare.
I got hit with a double whammy of sorts. First, the chemo wiped out enough of my immune system to make it possible for a normal rhinovirus to nearly give me pneumonia. Second, the dose of chemo wasn’t high enough to prevent the stress of my ex, and finances, from instigating a flare. The best part is that the rhinovirus likely triggered an immune response which, coupled with the stress, resulted in the flare.
My eyes are being aggravating. My joints are miserably swollen, red, and painful. My intestines feel like they’re shredding while simultaneously being filled with large pockets of air. Simply put: I’m a Behcet’s addled mess.
When I sent my rheumatologist an email stating that I was feeling horrible, she had responded with a few ideas regarding what could be causing it…and the option to suspend treatment with Cytoxan. Saying that I was shocked doesn’t even begin to cover things. I have only received two infusions, and was told a minimum of six would be required to even give me a chance at remission. I went into this treatment protocol with fight in my heart, and accepted the 6-12 treatment protocol plan with the understanding that any infections could slow down treatments. I also knew not to expect immediate results.
Yes, I’m annoyed I’m flaring, which following my ER visit is definitely what’s happening…but I don’t think it means the Cytoxan isn’t working. Knock on wood…but I haven’t had a seizure since starting the protocol. More importantly, the other symptoms were completely absent during the first round of chemo, minus a few minor symptoms cropping up close to the second round of chemo. Given the amount of stress that occurred a few days prior to the second round, I’m shocked I’m not having a more severe flare. Normally I’d have sores, and intense GI bleeding. I’m only dealing with minor bleeding, and have no sores whatsoever.
To stop treatment would, to me, be admitting defeat. I’d be accepting the idea of treating symptoms as they arise. I refuse to live my life that way. If I had to, if they genuinely couldn’t keep my symptoms managed, then sure, I’d find a way to go on living this way, but I don’t think I’m even remotely close to defeat at this point.
My next round is in 10 days, which reminds me that I need to inject myself with Lupron TODAY.