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I live in chronic pain. The reason for my pain, is Endometriosis. I was diagnosed through surgery when I was 17. I have decided to have this blog, so that those in my life can get a peek into my day to day issues that affect my life in every way.

Sunday, September 22, 2013

100 days Post-Op Lumpectomy

Today marks 100days since i had my lumpectomy. One would assume this should mean i'm all healed up, i'm free of breast/arm pain and that my scar should be perhaps starting to fade.

You would be wrong

In reality i still have an open wound that requires daily care (saline irrigation, re-packing with products designed for tunneling wounds as mine was, and bandaging change), i still have a great deal of pain in my breast (both nociceptive pain and neuropathic pain), and of course my scar isn't starting to fade as the wound is still open.

Bonus: i still also have a fever that i've now had for at least 2+months now (started taking temp one day i felt crazy feverish, that day i was 102F when my norm is 96.6), and quite likely still have an antibiotic resistant staph infection (not MRSA, this one has another name cause its sulfate sensitive) deep inside my breast despite far to many courses of antibiotics, so much so that i've now been told i have become immune to the only antibiotics the Staph infection WAS sensitive to. This means if the most resent culture swab taken shows i do in fact still have an infection there is no way left to treat it to my understanding, so i have to get better "on my own", and that this persistent fever and pain are "my new normal"

So glad the dr's felt the need to do an excisional biopsy (Lumpectomy) that ended up all being for a lump that was simply scaring.... Not.

Now after having that scar tissue lump removed that was less than a 1cmx1cm large, i am left with a ball of scar tissue in my breast thats got to be close to 4cmx4cm and who knows it may still get bigger as i am not healed yet.

I keep meaning to go into more detail on this blog about all the courses of antibiotics, about the wound how it would heal some than stop for weeks on end, and in time about the "care" i was given by my surgeon. I want to do this if even only for my own record of everything, but it means digging into something that can make me very upset, and crushed. In time i hope to be able to without me becoming a mess, perhaps that will be possible once i'm healed, time will tell. For now its about trying to ignore the situation, do everything "right" i can to encourage my body to heal on its own and try to cope with the pain in my breast (in adition to everything else, yay) the biggest issue i find is it messes up the use of my left arm to as the pain radiates from my breast, into armpit and beyond so my left arm is super weak at best and to soar to move normaly also.

Its such a mess.

Monday, September 9, 2013

What do you say about months of infection fighting

i hadn't written as i wasn't sure what to say, i wanted to share all the good news of my 2week post-op appointment, but by then my breast was getting more sore than i was 1-4days post-op and i didn't want to jinx anything as the surgeon wouldn't look at the now very tender wound that was leaking blood and fluid but hadn't until 11days post-op so it concerned me but didn't seem to concern the doctor at all, in fact she wouldn't look at it.

At that appointment i also learned i had surgery to discover a lump that was cancer free, in the margins they also ended up with a 2nd lump that was due to fibrocytic breasts that i already knew i had.

Turns out that leaking was the build up of an antibiotic resistant staph infection up before the infection tunneled fully through my breast in 2 directions giving it self a way to drain but not before it made it look and feel as though my breast would burst open, and i guess in a way it did.

I will go into all the details when i can mentally go through it all, and when i have the time as it will be a long post.

The key is i am now on my 87th day since i had my lumpectomy and i still have a hole in the side of my boob that's open to the world, large enough to stick the tip of my finger in, sure this is way smaller than 6weeks ago but its there none the less. Despite the fact i am currently on my last day of this course (10days) iv antibiotics and hooked up to a pump that gives them to me 3x a day i believe i still have an infection. It will be unable to be tested for yet* the fact i have a fever off and on and at times up to 101F** and much increased pain again in my breast along with the reality my healing has started to slow dramatically of perhaps stall again makes me thing this stupid staph hasn't left yet. In an hour me and my mom will chat and go over the game plan as to what i do now, do we go back to the place where my infection seemed to be improving when i was admitted for 4days (even though its an hour from our home), do we talk it over with my family dr who openly admits much of this is beyond him... (the other options i won't go over as in my head they are not options anymore and i won't go into that to protect those with many years of education and great layers likely)

I will go into details about all of the last 87days + when i can do it but for now this is my update.

* after being on antibiotics a swab culture will likely read that nothing is growing even with a present infection if it hasn't been long enough since off the antibiotics as they mess with the result. In most people that would mean a simple blood-test would do the trick as if your white cell count is up, it means you have an infection, if no rise no infection. The issue here is EVERY time i've had a swab and blood taken the same day the blood shows no white-cell count rise, yet culture keeps showing the exact same infection so i now know that my white cell count is not a reliable test, and seeing as my family doctor has witnessed these results to he's gotten to the point he doesn't even try that test just the swab.

**with a normal for me at 96.6F where as most of you reading are likely at 98.6 that means what 101 is to you is more like 103F to me