Health Update: Limbo

Enough people have asked me about my medical situation that I feel I should just post another health update.  Anyone who reads this blog for posts about violin making or parenting or cakes and feels this is too much information, please read this, or this, or this instead, and I'll meet you at the kitchen remodel post soon.

To recap, I've been struggling with granulomatous mastitis for over a year.  It may be gone, but it's hard to tell.  I have been on and off steroids since December.  When I went off them the first time a few months ago I thought we were done, but then my breast started to flare up and hurt again, so back on them I went, and at a higher dosage for longer than the first time.  The steroids weren't pleasant but they did the trick.  I'm off them now and hoping this time it's for good.  Generally people with this condition suffer it for about a year to a year and a half before it burns itself out, and it's been a year and two months, so maybe I can start really healing.



The problem now is that I recently got a mammogram and it turned up something new.  They found a lump in each breast that they wanted to examine more closely.  I got another set of more targeted mammograms followed by an ultrasound, and they decided the lump in the left (normal) breast was just a cyst, but they can't tell with the one on the right.

Typically the next step would be a biopsy.  But....  I still haven't completely healed from the last one.  When you puncture a breast with granulomatous mastitis it just doesn't react well.  The scars from the second biopsy and the time they drained the abscess are still weird, and sometimes do alarming things like turn black and ooze.  The idea of going through another painful procedure that will likely cause me more problems when the odds of it just revealing another stupid but harmless cyst is not appealing.

I asked about an MRI as a non-invasive alternative, but the doctors seem to agree that that may just be opening up a can of worms.  It would answer the cyst question, but it may also show lots of strange things that may inspire more investigation.  Since my breast is still a carnival of weird, that seems risky.

So what are we doing?  Waiting.  Because when I asked what we'd be doing right now if I did have a biopsy and it came back positive for cancer, they said they would wait and do a followup in six months.  Since all we'd be doing is more images later anyway, I'm just doing that, except they recommended I come back in closer to three or four months.  I can't stomach another biopsy until my breast is fully healed and can react to it normally.  So we wait.

I hate the uncertainty.  It looms in the background of my days, now, the wondering if I'm living with a little lump of cancer or not.  Most likely not.  But it's like the breast cancer version of Schrodinger's Cat--it's both things at once right now for me, which is an unhappy limbo.

The other unpleasant thing which may or may not be related to the steroids, is that I have a spot in my left eye.  I've had a glowing spot in that eye for a long time, but it's off to the side and doesn't interfere with anything.  A couple of months ago it spawned a friend right in the center of my vision.  It's a lot like when you look at a bright light and the after image glows in front of you and distorts what you see.  But this one is caused by fluid on my retina and doesn't fade.  The eye doctor said it should eventually go away on its own, but that the steroids could slow that process down.

It's driving me crazy.  It makes my work harder to do because my depth perception is impaired, and I can't read out of my left eye at all.  That hasn't been an issue until I had two rehearsals this week where I had to do some sight reading, and sight reading without decent sight is much harder!  Both rehearsals had me seated on the right, and I never realized how much I depend on my left eye to focus on the left page of the music until I couldn't use it.  I may just have to memorize a lot more for my upcoming concerts than would normally be necessary.

At least I am off the steroids.  And I'm not in pain.  And I probably don't have cancer!  Or Ebola.  (Always good to remember to be thankful for not having Ebola.)