Sunday, May 19, 2013

Not What I Had Planned

Well, guys.....I have to admit that Friday's adventures caught me by surprise. Want to hear all about it? Got some time? It's kind of a long story, so make yourself comfy. Maybe pour yourself a cuppa.

It all started a few weeks ago, as I was assessing my recovery from the rituximab infusions. For the first dose in the cycle, things went as planned. Then the second dose two weeks later was infused uneventfully. I followed the prednisone dose schedule as prescribed by Dr. Young Guy, and as I reached the point in tapering from 30 mg to 15 mg, began to sense that things just weren't.........right.

I had been cruising along feeling my energy levels rise right on track with my previous three rituximab cycles, but then inexplicably, I seemed to become more tired, instead of less.

I thought that I had experienced fatigue in just about every form imaginable, but this was strangely different. It's hard to describe, but this felt like a weird combination of weakness, drenching sweat, and fatigue that I have never experienced before.

On a follow-up exam with Dr. YG, I voiced my concerns as I sat in his office quivering with exhaustion and soggy with cold sweat. He ordered labwork and I fully expected everything to come back normal, just as it had three weeks earlier. Dr. YG reassured me that we would figure out what was causing me to feel so crummy.

I got a call from the clinic the next day: "Julia. Your white blood cell count is very low. Come back to the clinic and we're going to draw more blood samples."

It was Friday afternoon and my doctor was leaving for the weekend, but he wanted to have me monitored and further assessments done before he left. He sent me to the emergency room for yet. more. labs. and to be checked thoroughly for any kind of infection that may prove to be a serious issue with my immune system so weakened.

So I called Terese in a daze and asked her to drive me to the hospital. John was at work and I didn't trust myself to drive. I remembered that John had some face masks in the garage that he used when spraying our fruit trees for bugs, so I grabbed a new one and slid it on. I wasn't looking forward to walking into a hospital waiting room and it's germy population, and thought perhaps I could put up some kind of barrier between me and the bugs hanging around other sick people there.

She expertly maneuvered us through Friday rush hour and I found myself walking into the ER in a daze and shortly thereafter found myself in a hospital room, the door of which was sporting a big sign: EVERYONE must wear a mask before entering.

Everyone, including John, who asked for a handlebar mustache to be drawn on his mask. Spiffy.

After several hours, and satisfied that I didn't have an active infection, the ER docs elected to send me home with strict instructions to isolate myself, to monitor my temperature, and to return should I show any symptoms of an infection.

Which is what I am doing.

As I'm twiddling my thumbs while resting, (Boring. Very boring.) I'm also wondering WHY my white blood cells -- specifically my neutrophils -- took such a nosedive. So are my doctors.

The weeks ahead and follow up hopefully will provide answers. At this point Dr. YG is thinking that this is possibly related to my rituximab, although he tells me that this would be a very unusual side effect of this drug.

Yeah, well.....that's me. Unusual.

There's other potential causes but I'm not allowing myself to go there at this point.

As Dr. YG and I finished our most recent conversations he sighed. "Well,'re always so........interesting."

Um. Thanks. I think.

So I'm hanging around on the couch, watching baseball and old movies. I'll keep y'all posted.


Kelly said...

Rest well, get better and go with infusion reaction, on it's way to resolution.

Meantime, go Mariners...until they play the A's. Game on.

ShEiLa said...

For some things I have learned that there is no rhyme, no reason. I hope you feel better and that your levels are normal soon. (Hugs)


Annette said...

I guess I should be happy that I'm boring. How is the fatigue now? Hopefully getting a little better. Glad to hear that they jumped into action

Meg said...

I always hate to get that "you're so unique - I've never seen this before" comment. I hope you are feeling better now and you're starting to get more energy.

annie said...

Can the rituximab make you more prone to infections or can one of your meds be making you more anemic? Whatever is going on, Dr. YG seems to be very alert to your symptoms. Hoping everyting is well with you. Take this time to RELAX, Julia.

Beth said...

Do you mind sharing how low your count was/is? My WBC has gone as low as 2.8, at that point I was sent to a Hematologist, on that day it was back up to normal. The only thing I notice when it is low is that I'm prone to get an oral thursh infection.

Julia Oleinik said...

Thanks everyone for the well wishes!
Beth: my wbc at it's lowest was 1.0. Specifically my neutrophils were extremely low at 0.01 (normals being 1.80 -- 8.30) Has since risen to 0.28. So inching upwards. Will re-test in a few days.

Michelle said...

Holy Moly! You need to take up my obsession with quilting. A nice fabric obsession will keep you entertained.

Seriously, I hope you feel better soon!