It had to be said

"It must be so frustrating that you've gone through four months of all these drugs, including six weeks of steroids that have wrecked up your system - all for nothing. The pericarditis is still there."

All for nothing. I feel like I've been run over by a bus most days (and look like it too), all for nothing. I've tried to remain optimistic throughout this process but when someone very close to me pointed out that we're no further ahead four months later (I don't think it's unfair to say that I'm even a few steps further back) it was like a final puzzle piece falling into place. It had to be said, and I hadn't been able to say it to myself yet.

Sure, I've gone through the weekly disappointment when my doc puts his stethoscope to my chest and again hears the squeaking and rubbing. Intellectually I understand that my treatments have been unsuccessful and in fact are in the long term potentially doing more harm than good. It's a series of gambles when dealing with a rare illness, there's just not enough information out there to be able to follow a proven regimen. All of us dealing with this illness have to make the best decision we can given what our doctors can tell us, what we've researched on our own and often listening to what our instinct tells us to do.

Hearing "all for nothing" has caused me to think even harder about upcoming treatment options. I mentioned in my last post that I'm supposed to start a chemo drug next week. I still don't know if I'll do it. My body feels beaten up and I feel that I need a rest from all these meds (and I'm stuck with the steroids for at least another few months as it has to be tapered safely). We're still trying to address one symptom of my illness (pericarditis) and haven't even yet begun to treat my illness as a whole.

Do I have the luxury of giving myself a rest? Am I weak if I say I need to raise the white flag for awhile? Friends and family who know me might say that this doesn't sound like me at all, they know a fighter who always can raise a smile. Right now I don't even recognize the person I see in the mirror after the effects of steroids, truth be told I don't recognize the person inside of me at times either right now. I so desperately need a shred of good news to help boost me along on this journey.

For now, I'm going to step into a long, hot shower. Cleans my body and my brain, and I'll be ready to face another day. And I will smile because despite "all for nothing" I still have much to be grateful for.