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More holes, more steroids.

I was called by my oncologist ‘s office last week, and had to go in.  I was hoping this meant a change in approach.  Instead, it was three hours of driving for another prescription for prednisone.  These are feeling like wasted trips at this point.  While the prednisone keeps the masses from getting huge before they burst, they still happen, and they still burst.  I currently have two open holes in my breast, both of which have been deeper than the previous ones.  There is another mass developing on the other side, so that will be next.   The doctor said there are 15-20 ducts in each breast, so this could be a very long journey as the disease works it’s way through all of them. 

I’ve been hiking, running and walking a lot lately, and the pain is no joke. It’s actually worse when hiking or walking, since I’m out longer doing those than out for a run.  Sports bras are a mixed bag, since the pressure of it keeps me in place, but that same pressure is sometimes almost unbearable on the affected breast.  I can always tell how bad it will be by how much it hurts to put the bra on in the first place.  Sometimes that means I end up walking on the treadmill instead of outdoors running. 

I’ve been duagnosed with Hashimotos hypothyroidism by one doctor, referred to my GP about it, and she refused to put me on synthroid.  The prednisone weight gain is out of control, no matter how active i am, but she disagrees with what my other doctor sees in my bloodwork.  The other doctor is not comfortable prescribing the synthroid but made the connection to hypothyroidism, which she thinks is obvious in the bloodwork results.  It’s incredibly frustrating, and out of my control.  We are moving in the spring and will be finding new doctors for everyone anyway.  

Time is passing very slowly right now, waiting to move, getting less than stellar medical treatment, finishing up school… It’s going to be a long couple of months.

Yesterday my breast exploded again.

WARNING! Unapologettically gross and accurate description.
A large mass erupted in a spectacular fashion, right in front of my eyes.  It went from pink to bright, angry red to black over two days.  It had been getting bigger and hurting more, but then it escalated so fast.  It hurt like hell, taking my breath away, and then suddenly there was blood and pus pouring from my chest.  It still hurts, and each time I feel like I’m going to pass out, I know a new section is opening up.  Each bit is it’s own little nightmare, opening up like a yawn, but releasing all of the gunk that it has been collecting and growning for weeks. 

I saw my breast surgeon last week, and all she did was put me back on prednisone.  No mention of surgery, no other ideas.  Just more of the same. Warm compressed and steroids.  Meanwhile I’ve been diagnosed with Hashimoto’s hypothyroidism by another doctor, so I’m hoping for some relief, and maybe an end to the weight gain.  Since IGM is often secondary to another autoimmune disease, fixing my thyroid might actually help with it as well.  

I’m so tired of the seemingly endless cycles of pain, swelling, drainage, and healing. If I don’t get help otherwise, I believe in going to have to go through this until all of my ducts have been affected.  That is an unacceptable answer to me, if there is other treatment available.  Why not just remove the ducts?? Am I crazy to think that would make srnse? No ducts, nowhere for the disease to go.  Right??

Prednisone- friend or foe?

After my IGM  diagnosis, I was put on prednisone for 10 days.  Then another 10 days.  Then another… Each time starting at 40mg, tapering down to 10mg.  I was initially given prednisone for the severe allegic reaction I had to the sulfa antibiotic they gave me, and it turned out, it took down the I inflammation in my breast.  

After being completely blown off by a surgeon back home, and storming into the office to get my paperwork, resulting in me showing the nurse my about to burst mass that the doctor was ignoring….  I ended up 90 minutes from home with a surgeon who knows her stuff.  She put me back on the prednisone, but this time at40mg for 10 days, then30, then more 30, then20 for over a month, finally down to 10.  It was effective, but I’ve broken 2 bones while on out, because it we amend them.  I’ve also gained about30 poinds.  My face looks an overinflated balloon.  I supposed to be walking rather than running, which would be fine if i didn’t WANT to run so badly.  

Being on antibiotics and a  steroid has left me without much of an immune system during one of the worse flu seasons in recent history.  Alarming, at brst.  I wear a mask now when i leave the house, and even in the house since our son is sick.  I’m stressed out beyond belief over feeling so out of control.

I was off the prednisone for about 2 weeks before more masses started.  Now i have 5, and see the surgeon tomorrow.  At this point I’m petty sure we need to discuss surgery to remove the ducts, since this was all expected to be over by now.  Tomorrow was supposed to be a simple follow up to make sure I was doing well and that the masses were gone, that the sounds bad healed well.  Now I’m kind of freaked out.  It is incredibly painful to have these masses growing, and they will soon be opening up, creating a completely different nightmare.  All I want is some relief, and to feel normal again.  I know that’s a lot to ask, and nearly impossible since i now also have thyroid modules and will be getting a full workup for Hashimotos as well.  Never a dull moment!!

How it began

Last summer was a rough one.  It started with pain much like I’m having right now in my right breast.  I ignored it as a fluke or pms discomfort.  That was a mistake.  

When I went to the hospital with a massively swollen breast and nearly unbearable pain, they dismissed it as simple mastitis and sent me home with antibiotics.  When those antibiotics didn’t work, I was given another that tried to kill me.  I’m talkong full on serum  sickness with fever, blistering hives, and rheumatoid arthritis.  No change to my breast, though.  That’s when the doctor got nervous.  She sent me to an oncologist.

My breast surgeon was amazing.  She was such a calm, steady figure in a room I didn’t want to be in.  My doctor was concerned that i had inflammatory breast cancer.  Ok, we were officially talking about cancer now.  I needed a bioosy.  Ok, standard procedure, why is everyone looking at me like that?  The biopsy would be in a few days.  I guess I should tell my husbands what’s going on.

When I got home, I looked up inflammatory breast cancer, that’s when i realized why the medical students in the room had such big sad eyes.  Inflammatory breast cancer is NOT standard procedure.  There was a good chance it would kill me, especially given how huge my breast had gotten.  Suddenly i was terrified.  I just wanted to hug my kids and never let go of them. I was probably going to die by 40.  

The day of the biopsy was crazy.  I have a tendency to panic and flee from medical procedures, but I had to keep my shit together on this dsy.  I had cbd infused lition, lavender oil, and a mantra.  There was a window in the biopsy room, where i could gaze out at the trees blowing in a glorious August breeze.  Until the front loaded showed up to dig out new parking lot.  I laughed and laughed at the ridicullousness of the situation.  Fortunately they didn’t stay too long, and I was able to get my Zen back.  I breathed my way through four seemingly ice core sized samples being taken, and chatted about just wanting to run again, with the sweet med student who had to keep pressure on the incision afterward. 

I left the office that day with the knowledge that i either had inflammatory breast cancer  or something called idiopathic granulomatous mastitis.  WTF was that???  A rare breast condition.  Ok.  Great.  Clumps of cells grow out of control.  Presents like cancer.  Ok…  Benign.  Now we’re talking.  Ruptures through the skin.  Ewwww.  So when my surgeon called the next day, as in, she actually called, I stopped breathing.  Her news was good but complicated.  I indeed had the very rare but benign condition.  I would still have a long road of prednisone treatment ahead, and possibly surgery, but I did  NOT have cancer.  

I was so relieved, but had no idea what I was in  for.  I naively thought the steroids would just fix it, and I’d move on, get back to normal.  

It’s been six months, and nothing is normal.