Hello everyone. It's certainly been awhile. I'm probably the only blogger in all of blog land NOT posting about the Golden Globes. I am watching the red carpet arrivals as I type this (Oh, Guiliana Rancic, please, eat some Oreo's), but I'll keep the fashion commentary to the rest of all you bloggers out there.
I'm not writing about the Golden Globe Awards, but I AM talking about Golden Globes today. Which Golden Globes, you ask? Well, mine of course. Or current lack thereof.
I wish I could say that the road to mastectomy recovery has been going smoothly, but (if you follow me on Facebook or Instagram you already know this) unfortunately I encountered a few speed bumps. An early morning rush to the Emergency Room on New Year's Eve landed me in the hospital for a week with a nasty post-operative staph infection.
I went to bed on the night of the 30th exhausted and noticing bit more pain than I had been having, but I chalked it up to all the running around for holiday festivities. Popped my painkillers and Valium, and went to bed.
I didn't sleep a wink. I tossed, I turned, I took more painkillers, readjusted my pillows, sighed, readjusted where my drain was pinned, tossed and turned.... you get the point. When I finally got out of bed at 6:30am realizing I wasn't going to sleep at all, I went right to the bathroom and looked in the mirror. I noticed the side where my drain was pinned seemed heavier than usual, checked the bulb and realized it was completely full after emptying it at 11:30pm the night before.
At that point the drain had already been in for 30 loooong days, and was used to waking up with about 5-10ml of fluid in it each morning. Completely full? The bulb holds about 100ml.... what the fuck was going on??
In the mirror I saw my incisions looked the same, no sign of redness, dehiscing, or infection of any kind. But the skin of my right breast looked blotchy red all over, felt hot to touch, and was noticeably bigger than my left breast. For those who know me in real life, my right breast has always been a cup size smaller than the left (as evidenced in the top right purple-hair pic. Go take a second and look...). And every single one of my guy friends has ALWAYS pointed it out over the years when they saw me in a bathing suit. Marla and her Magic Bitty Right Titty. Like my trademark, or something. So seeing a bigger right breast (or a tissue expander in place of my breasts) was especially strange.
I kept staring at the right one in the mirror. Wait?!?! Did it just move? Is my right milk dud about to give birth to some goopy creature like that guy in Alien?
Temperatures of those with autoimmune diseases run lower than what's considered a "normal" temp of 98.6. When I tell someone I have lupus and a temperature of 99 is considered a "real" fever for me, I'm more than likely brushed off. It's frustrating using the word "lupus" doesn't ring alarm bells for most medical professionals I come in contact with, but as soon as I say, "I'm on 3 types of chemo and steroids," everyone stops and listens.
"What kind of cancer do you have, Marla?"
"I don't have cancer, I have lupus, a few other autoimmune diseases, and a congenital heart defect."
I was finally taken back to a room in the ER. Poked, prodded, the little mosquito bites I now call my breasts out for all to see, port accessed, hundreds (ok, that's an embellishment) of tubes of blood drawn, peed in cups, IV fluids, "Can I listen to your heart murmur again... WOW!" vitals, lots of doctors, nurse shift change, Dilaudid, more blood drawn for cultures, 3 failed attempts at an IV for "just in case," it is finally decided I do indeed, have an infection. Complete with a white blood cell count of about 23,000.
12 hours later it's all aboard the admission stretcher to my hospital room!
That was on the flat screen TV upon entering my room
In the grand scheme of things, as much as it sucked being admitted to the hospital on New Years Eve, I was assigned to a private room with an absolutely gorgeous view of the Philadelphia skyline, perfect for watching that night's fireworks. We're talking the penthouse of hospital rooms. In Camden, NJ. But whatever, I was happy.
My view of the Phildelphia 2015 New year's fireworks
Come day 7, I was NOT happy. I was miserable, sweaty, missing my bed, my fuzzies, my husband, and my life. I was literally delirious from infection, fever, low blood pressure, fatigue and all of the meds being pumped into my body. There are chunks of the week I don't remember, conversations I only know existed by looking at my phone history, and texts of well wishes followed by my replies of "khiuy" (I'm serious!). I did have a ton of visitors (love all of you!!!), but I was given way too much time to think. Not clearly, but think just the same.
WHY did I go ahead with the mastectomy? I don't have breast cancer, what was I thinking? What's wrong with a mammogram and breast MRI each year? Why did I let these doctors mutilate me? I'm such a drama queen. I have no fucking nipples. What did I expect, I'm on all the immunosuppressants. Of course I was going to get an infection. Did I remember to wash my hands each time I stripped my drains? Is this my fault? I bet Angelina didn't get a post-op mastectomy infection. Why did everyone agree to this? Why didn't anyone just tell me I was being paranoid? Don't I have enough fucking problems? Lupus and 4 heart surgeries with one in the wings wasn't enough for my plate? I have no nipples. Poor Steve. Don't I have enough scars? Despite the size discrepancy, I had really nice boobs and super cute nipples. Angelina kept her nipples. What if it was never in the cards for me to get breast cancer? Are both my breast cancer stricken grand-mothers looking down on me in disappointment? What if that lump stayed pre-cancerous forever? What are two more tests a year? What the fuck is a PRE-vivor, anyway? Beyonce never sang about that. I didn't survive anything, I'm a fake. And now I have no breasts...
I drove myself crazy. Like that dumb N'Sync video. I was on contact precautions, so I technically wasn't allowed to leave my room. There were points where I felt the walls were closing in on me, and I had finally reached a situation that I couldn't charm, work, or medicate my way out of. I found myself in some dark places that even looking out the window at the skyline couldn't get me out of.
My discharge was actually setback a day and a half because of an oversight by the doctors. I had some choice words for the lowly resident who had to break the news to me, especially because it was an issue I had been bringing to everyone's attention for days (and eventually took matters into my own hands... do not try this at home- or the hospital, kids). No, I wasn't thrilled, but so many in that hospital took the time to get me better. Mistakes happen, we are all human, and I have certainly made mistakes in my nursing career.
1. First shot of Dilaudid in the ER. Floaty eye!
2. Learning I would be admitted for a post-op infection.
3. Day 3, still smiling.
4. Day 5, trying to maintain my sanity.
5. Day 6, fucking miserable.
Day 7 was a big, fat middle finger to the camera.
I'm home now, sitting in my comfortable office (I didn't write a damn thing while the awards were on!) that's just messy enough to know where everything is. Some of my favorite pictures to my right, my leg lamp shining brightly, and tunes playing in the background. The staph infection put my tissue expansion process and physical therapy on hold for a few weeks. But, I'm home. Home. So grateful to be home.
I feel like as time goes on I get even farther behind on emails, blog posts that I promised to get out, the list keeps getting longer. I'll get to it.... eventually. I have so many thank-you's to get, and even if it takes 6 months, I WILL get there.
I just want to use this post to do a little lupus education. The disease itself causes an overactive immune system, basically at constant war with itself. To calm the immune system from attacking vital organs, those with lupus take chemotherapy, immunosuppressants, and steroids to slow down the immune system. These are the only drugs powerful enough to get our overactive immune systems to raise and wave the white surrender flag. Yet, these very drugs make us extremely susceptible to infections, so we tend to get sick quite easily. And frequently. And it takes us much longer to recover.
Wait? So the medications you take to calm your disease make you prone to infections... but don't infections cause your immune system to go into overdrive to fight off the bug?
That's right, Mr. Wizard. As my veins were getting pumped with the Superman of antibiotics to help my immune system battle the infection, I was taking Kryptonite immunosuppressants to keep my immune system from fighting the infection. A double-edged sword. A never-ending vicious circle. This is my life.
But today, I'm happy to be home!
Love you all <3
Click here to read about lupus and infections