Today is 5months post-op Lumpectomy. One would think this should mean I'm healed, and my arm should be back to full use. Yet neither are true, i still have a wound healing (all be it small now), and i don't have full range of my arm, tons of nerve damage that wasn't caused by the surgery and soft tissue damage caused by both the surgery and more-so the post-op infection that ravaged my breast for 4+months...

Thanks so much surgeon for trying to sweep it under the rug that was exposed to an antibiotic resistant strain of Staph during my surgery..... where as a real thanks to the dr's who saw the mess didn't ignore the 2"x1"x4" open wound i had.

(This is about a month after the wound opened, this is after the wound packing was removed but before the home-care nurse cleaned out the wound. It looks disgusting, gag worthy even. Now please try imagining having that on your body for 4months, and someone coming in each day to clean it and than slowly push inside cotton ribbon (or other packing) to fill the wound, so now your breast has a large hole but as literally been stuffed and you can feel it. The nastiness you see in the wound, yes that's chunks of puss deeper in the wound as it acted like a bowl there was much more that only would come apparent when arigated by sailine and would slip out.)

Thanks to it being ignored for so long with an infection i have a far larger area of no feeling on my skin (mapped the numb areas all along), yet i feel pain in my breast most of the time now, often enough to distract me or make me clutch myself instinctively, i also have a very large amount of nerve damage in my breast that leaves me with a burning feeling most all of the time if it weren't for a high dose of a neuropathic pain medication, even still i feel burning at times in my breast and into my armpit.

Also they suspect the fact i still have a fever daily after the infection is gone is thanks to all the "trama" my body went through this summer. My body's temperature regulating is now out of whack so i have been told it may take months for my temperature to come even close to what my normal baseline temp was originally.The extended fever also seems to have caused a murmur that i didn't have before.

Not exactly what i was expecting 5months post-op

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.

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

test post (ignore)

this is a test post seeing if i can schedule future posts and write now

Procrastination the best way to Avoid my current reality

I’ve always found myself to procrastinate, and this week is no different. I think it started out as a coping mechanism. As a very young child if I was told about something early on even if it was just letting me know we’d be going somewhere I’d start fixating on it and get myself so worked up that before we were to head out I’d be sick to my stomach, and at times it would make doing what was planned impossible at worst and at best un-enjoyable due to how sick I’d end up feeling. After witnessing this, my parents would do their best to hold off on giving me information about trips, special activities or any plans that might get me excited until the very last minute so I wouldn’t get myself worked up. Well now I find I in some ways do the same thing to myself. On one hand I like to know things early so I can be prepared, BUT if I follow through with preparing early I get worked up. So here I am 1day 23hours from being on the operating table and none of the things I wanted to have done prior to surgery are done yet. I’m trying to get myself to do them now, but the moment I start to get into the swing of things I feel this pit in my stomach, preparing makes it real. If I just continue to procrastinate I get much less worked up, of course it also means I won’t be at all prepared around the house but at this moment in time feeling terribly sick and filled with anxiety is the more present issue.

If I was smart I would have prepped as much as possible last week, when I could also take the anxiety meds I was given due to this situation I find myself in, but than there’s a good chance I’d be prepared but find myself curled up in a total meltdown all this week. Who knows what would have been best. I know that I’ve had my meltdowns this week, but not as bad as I would have expected and in fact most of my meltdowns have focused around the fact I’ve been in a shit load of pain this week and it was just too much to cope with the pain and knowing I’d also be having surgery for a totally separate health issue that could turn out to be yet another health related nightmare added to my plate.

I think I’ve done well this week considering. Monday I ran out of my pain patch prescription without cluing in, normally I can just call and he will refill them when I am in a pinch but as I haven’t seen him in 6+months his reception is acting as a road block and told me I would have to see him before he would refill the script. She also suggested I could speak to my family dr. about it, well my family dr. I can’t see for over a week and I can’t go without my pain patches. luckily I hadn’t used the additional 1/2dose patches he prescribed so I had some of those still with refills, although I didn’t have them on hand so I went 24hours with only half the medication I’m prescribed. Now instead of one full dose Butrans patch I now have two 1/2 dose patches on, works the exact same its just not a long term solution as I am prescribed the half dose patches for a reason, to use in addition to my other patch as needed. Just irks me a bit as I know if the receptionist passed along the message the pain management dr. I have would have no issue prescribing another month or so until I can get in to see him when a cancellation appointment becomes available. The medications I’m on are impossible to abuse at least in any common way that I can think of and I’ve been on them for 2years now so I don’t see the issue but whatever I will deal with this mess after surgery is over with.

If I start to think about surgery though I start trembling, it’s weird though as someone who has been but under for 4 previous surgeries none of them fazed me really. I guess because this one affects a part of my body that I connect with femininity, sexuality and my being. It’s the last part that makes me female that hadn’t yet mistreated me, won’t do into all that but all the other parts that connect to women and their “femininity” have all seemed to stab me in the back so frankly I like my boobs, and I don’t want them messed up. This surgery will leave me with a scar even if the surgeon is able to do what she hopes to and hide as much as possible. The surgery could also leave me with a very visible keloid scar, in a very visible spot (even in my regular clothing) and possibly a clearly visible size difference between breasts and then there’s the chance of puckering or other healing issues. Even if it goes “perfectly” I am still 26 and having a lumpectomy. It also means that the last part of my body that I connect femininity and sexuality to that I didn’t yet hold some grudge against is now causing me issues at the least and at the worst trying to kill me. I of course hope that after surgery that pathology comes back and the tumor was cancer free, but having had a tumor found I’m sure I will always have it haunt me that what else or how many more tumors will show in my breasts in the years to come.