Thursday, May 14, 2009

A Blessing and A Curse

Many times, the medical assistants and I have laughed while giving my information to others, "She's in perfect health, except for this little cell-replication problem [known as terminal incurable cancer]." And working hard on staying healthy has had its blessings; such as not going completely bald all at once the last time I did chemotherapy, and staying symptom-free much of the time. My quality of life has been so good that this little diagnosis has seemed transparent to me at times.

The drawback is that I'm so healthy, we don't figure out what's wrong until it's REALLY wrong. For instance, when I had no immune system (neutrapenic) and was 6 weeks post-operative, I got a RAGING staph infection that almost killed me and left me in isolation in the hospital for a week. Yet my temperature never cracked 100 deg, the mark for when one is supposed to call the dr. Or like how the metastasis did not make itself known until it was pretty much everywhere and I was sinking low fast, yet my blood work stayed perfect.

Then there's also just the weirdness, the idiosyncracies that are me. I'm always good for a few surprises; just ask any of my doctors.

So right now, I'm passing all the tests. Yet why can't I walk? Why can't I breathe? Why does my chest hurt so badly, and I don't mean my incision area? Even yawning hurts; coughing is about killing me. The pain is causing me to breathe more shallowly again. And very importantly, why am I spiking a temp of 101, when I didn't even crack 100 deg when I was deathly ill before? This is so frustrating!!!

So the day after seeing the doctor, I had DH call and tell them I needed to see the doctor. I didn't even make it to the doctor appointment. When I showed up for the infusion appointment, my temperature was over 100 deg -- astonishing, for me (my normal temp is 97.2 -- and get this, I often get hypothermic (ie, 94,4) when I'm fighting infection!). The nurse asked me how I felt. "I feel like something is really wrong. My chest hurts a lot, too."

Okay, that did it. The doctor showed up and talked to me. No infusion, go directly to the pulmonologist and the cardiac surgeon.

By the time I got to the pulmonologist's office (one building over), my temp was spiking 101. Okay, that's really not right for me. And my sat oxygen, while a perfectly acceptable 92%, was definitely not my normal 98-100%. Heck, my sat oxygen was higher (95%) atop 14,242 ft White Mountain!

Yet everything looks good. Echocardiogram shows effusion is gone. Angiogram shows everything looking great. Chest CT does not show fluid (pneumonia or pleurisy) or blood clots. So what the heck is going on?

One thing the pulmonologist noted (and I wholeheartedly agree), these are the same symptoms I was complaining of BEFORE the pericardial effusion ever showed up on the echocardiogram. So perhaps the problem is we've never found the cause/root problem of the effusion.

Percussive thumping led the dr to believe there may still be some fluid around the lungs. So taking a bit of a stab at it, he gave me a shot of a steroid, a shot the same as the one I had in the hospital for pain and inflammation, and another round of antibiotics. That should hold me over till I see the cardiac surgeon on Tuesday; if I have a fever tomorrow, I'm supposed to call the pulmonologist.

Sigh. And I thought I'd be running up that hill by now.

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