Monday, January 12, 2015

All I want is to be home...

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.

Womp. Womp.

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?

I wasn't planning on sticking around to find out, so I dragged poor Steve's soundly sleeping ass out of bed yelling at him, "Emergency Room, now!" and by 7:30 I was being seen by the triage nurse at the hospital where I had my surgery.

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 digress.

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

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Tuesday, December 23, 2014

Everything will always be alright when we go shopping...

I'm back, bitches!

No, I'm not quite ready to be blogging on a regular basis, but I certainly wanted to touch base with my readers (all 6 of you, plus my mom). I am 3 weeks post-op from my double mastectomy, and I'm thrilled to say the long procedure went swimmingly. My heart behaved in the 6 hours while I was under anesthesia, and the breast surgeon saw no other signs of cancer (pathology reports still pending, but she feels confident in what she saw).

Today I'm not going to get into the nitty gritty, physical and emotional aspects of removing my lady lumps. I'm still in too much a Percocet-Valium pain/muscle spasm induced haze to articulate any of the more raw aspects of the mastectomy. All in good time.

This post has been sitting in my draft box unfinished for almost a month, because I had grande plans to publish this the week before surgery. But, as we all know, even the best made plans fall though (or whatever the saying is. I'm high on valium, give a sista a break).  There were lists of things I had to get done, so many doctors to meet with to ensure it all went smoothly, and even though it wasn't quite as crazy as my bachelorette party (there was no hot limo driver for me to violate dance with), I still had my girlfriends throw me an epic Bye Bye Boobies party a few weeks before the big day.

When I was told the date of my surgery would be December 1st, I knew that pretty much made Christmas shopping a bust. I was totally bummed. Call me crazy, but I like the hustle and bustle of the malls/Target during the holiday season. Let me also state that I detest the douche canoes in the parking lots and the dick biscuits who treat store workers like garbage, but, the shopping I love.

So when the oncology NP at one of my last pre-op visits told me I had to go shopping for a post-mastectomy camisole and that the best place to go was Nordstrom? It was if the skies opened and I heard the choir from Sister Act (once Sister Mary Clarence made them sound good!) singing "Hail, Holy Queen."

Wait, it gets better. The NP wrote a prescription for the camisole that I can send to my insurance company for a refund. Shopping at Nordstrom on Blue Cross' dime?

Sign. Me. Up.

And that is how a week before surgery, Brie and I strolled into the lingerie department at Nordstrom so I could get fitted for a post-mastectomy camisole.

Nordstrom is known for their impeccable service and personal shoppers, and impeccable service is exactly what we received. Nordstrom has a Breast Prosthesis Program, with Certified Prosthesis Fitters who are trained in fitting women for bras and prostheses after breast surgery.

Brie and I were introduced to Lauren, my certified fitter, and we were taken back to a gorgeous fitting room, and treated like royalty.

I sound like a broken record when I repeat over and over and over how difficult, emotional, and scary making the decision to go forward with surgery, and Lauren put me at ease and made us forget why we were there in the first place. I might as well have been at Frederick's of Hollywood buying boobie tassels and G-strings; Lauren didn't treat me like an oncology patient, and it brought a sense of normalcy to the entire experience. Plus, with Brie by my side, we always seem to be funny (read: obnoxious) and get a giggle out of any situation.

Lauren filled out all the paperwork to be sent off to my insurance company for the refund. There is a story behind Nordstrom's Breast Prosthesis Program, and if you visit the site, you'll find a You Tube video explaining how the program was born. Basically, the company wanted there to be a place where women going through such an emotional and painful journey would have a place to go to where they could be treated like a queen and feel beautiful. 

Thank you again Lauren, you deserve a raise!

The post-mastectomy camisole is zip-up, so you can put it on without having to lift your arms over your head (3 weeks out and I am still not cleared to lift my arms above my shoulders). It has little pockets that you can take on and off of the cami itself with Velcro, and they hold your drains. There are breast pads you can use to give you the look of having breasts until you have reconstruction. I can't be bothered to use them, but it's certainly gratifying to have the option.

In addition to the cami, there were a few items I either read about, or were told by friends who underwent a mastectomy that would aid in recovery. So now I bring you.....

Graphic design is not my forte....

Linky Cat wanted to make an appearance!

I'm not a good sleeper to begin with, but trying to sleep with drains coming out of your armpits, tissue expanders in place where your tits once were that are so tight it feels like two baby elephants are on your chest? Damn near impossible. I'm normally a side sleeper, which was also impossible given this situation, but the husband pillow (why the frig are they called a husband pillow?) gave me some support because I can't use my arms to push myself up, and made sleeping someone doable.

You will have a lot of time on your hands, so stock up on plenty of magazines. Preferably ones with the hottest J-O-O on the cover.

Since you can't lift your arms above your shoulders, unless you have a loving husband who will shower with you, or a sister willing to get wet to wash your hair, you'll want to have a shower cap since you most likely will not be washing your hair every day. Mine has flying pigs. Because, why not?

Obviously to keep your unwashed hair daisy fresh. Redken Pillow Proof worked well and smells great!

An absurd amount of time will be spent resting in bed or lying on the sofa, and the lap desk came in handy when I was too tired to get up to eat, or worked well to hold my laptop (you all know I can't stay away from FB or Perez Hilton for a few hours).

This is probably the BEST thing to get me through the procedure and my recovery so far, an amazing gift from my friend Melissa. Total. Genius. They were two pockets made from beer koozie material that hang around your neck and hold the JP drains. They were fantastic for the shower, and dried quickly so I can wear them throughout the day. Every single doctor appointment I went to, everyone in the office would stop me and ask where I got them. I felt so fetch. And upon opening them, I quickly realized they hold small bottles of beer and Champs in a Can. All class baby.

Stylin' and profilin'.
Post-mastectomy cami & beer koozies JP drain holders
(lots of these photos have already been seen on FB and IG, a big blogger no-no. Womp womp.)

A few additional things I forgot to take pictures of...

Comfy pajamas with button down tops. I lived in them for the first 2 weeks because you can't lift arms above your head. I bought a bunch of fun pairs from amazon. You can't tell in the picture, but those have cupcakes on them!

Neck Pillow- This was a lifesaver. They do make specific post-mastectomy pillows, but this worked just fine. If I was sitting up reading or watching TV, I wore it to support my neck. When I was sleeping I would put one end under my arm where a drain was being bothersome and the other end between my breasts. It was comforting, and made me feel like nothing could move around. 

Microwave that sits on the counter- our microwave is above the stove, and I'm not allowed to reach that high so I ended up having to borrow one from a very generous neighbor. Thanks Lisa!

One thing I did pre-surgery was get the house ready. My morning coffee is EXTREMELY important to me, so I made a space for clean mugs on the counter, bought a drawer for k-cups that the Keurig sits on, made things accessible in the fridge and cabinets. I didn't realize how limited I was until I got home, and as someone who is NOT good at asking for help, I felt a little more self-sufficient being able to do these few things. 

I'm sure I could think of a million other things that have helped, but I've reached my sitting in front of the computer limit. I do want to say, that even though I am always smiling and being silly, this was not a piece of cake experience. But I've had more support, more delicious food delivered so Steve and I don't have to cook, more friends and family, neighbors, people I've never met checking in, and I can never put into words how that makes me feel. Loved and grateful just don't seem to be enough.

Not sure when I'll be blogging again, but I want to wish everyone a Happy Chanukah, Merry Christmas, Happy Kwanza, and a HAPPY HAPPY and HEALTHY 2015!

Love you all.

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Linking up with the Let's Be Friends Blog Hop

Wednesday, November 19, 2014

I get by with a little help from my friends...

Happy Hump Day!

Today is T-minus 12 days til the Great Lady Lumps Chop Chop. There's a ton of things I have to get in order, plus a slew of doctor's appointments. Yesterday I saw the director of the Adult Congenital Heart program at Cooper, today I meet with the plastic surgeon to sign the consents for her portion of the surgery, and tomorrow is chemo.

It's funny to type this out (and I'm certain equally funny to read), but I've been going to second base with myself any chance I get. In privacy, of course, and away from windows.  I've been staring at them too, fixated on the thoracotomy scar that goes halfway across my right breast and has been there since I was 6 months old.  I don't want to forget what they look or feel like. I'm not sure if that's weird. Probably, because let's face it, I'm the epitome of weird.


Minus the little speed bump in my left breast, they've served me well, and I'll miss them. But out with the old and in with the new. 

Before I could go forward with the surgery, I had to give them the proper sendoff. A bon voyage, ta ta to the ta-ta's, bye-bye boobies, if you will.

My early twenties was a bit rocky for me (as it is for just about everyone), and I went through tough times, resulting in my not treating friends the way they should be. Those who had once been so important weren't a part of my life for a few years, and I am constantly reminded how lucky I am that they made their way back in (you bitches know who you are). I'm not sure where I'd be without them.

Brie took it upon herself to plan a Bye-Bye Boobies party, and saw to it that I had a fun night and was spoiled rotten. And, I was spoiled rotten and had a fabulous time with the girls! Both attached and unattached to me! 

Orange or raspberry sherbert + Korbel = Pinterest WIN

The AMAZING Boobie Cake made by the super talented Angela (top left)

No party is complete without pink boobie balloons hanging from the ceiling.

Fabiana got me this kick ass shirt!

Tasted just as amazing as it looks!

Bridget made pink boob cookies with chocolate nipples!

Who needs a surgeon?

You motorboatin' son of a bitch!

These girls are my heart. 

It was one of those moments where I had to step back and take it all in, grateful for all the love and support coming from those whose love and support mean the most. 

Linking up with Shanna and Liz

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Wednesday, November 12, 2014

Should I stay or should I go?

Happy Hump Day!!!!!

I, like anyone else with internet access, use The Googles for everything. Google is my spell check, my Encyclopedia Britannica, my useless fact checker, I use it to diagnose myself (why yes, that eye twitch MUST be from a brain tumor!), to learn song lyrics (at the top the stairs there is, in fact, darkness; not horses as I once believed), and I use it to cyber stalk ex-boyfriends check up on old friends.

I never thought at the ripe old age of 33, I'd be typing 'nipple-sparing mastectomy' into the Google search bar. That was a new one, even for me. Yet there I was researching and reading up on saving my nipples, something I recently learned is an option when having a mastectomy.

To save the nipples, or not save the nipples? That is the question.

Four weeks ago, Steve and I met with the oncology breast surgeon. Armed with a brand new pink notebook covered in glitter (because it's much easier to stay organized with sparkles), I wrote down a ton of questions. It never fails, whenever Steve comes with me to any doctor, we end up waiting at least two hours. He gets restless and starts to pace and complain, which results in my snarky "welcome to my life."

Yeah, I'm a bitch, yet somehow he still loves me. I must be doing something right (I was going to make a comment on what I'm doing right, but I'm not sure if my dad reads this).

Coming both professionally and as a patient from the pediatric world, I've grown accustom to having to push for things and advocating for myself in the adult world of medicine. I was ready to go and spew off each question I had one by one, and Dr. TM (that's Tits McGee) addressed all my concerns before I had a chance. I'm not sure why I was quite so surprised, as I have heard nothing but praise from both her colleagues and former patients.

When this post goes live, I'll be at Cooper Hospital armed with my pink glittery notebook, once again sitting down with Dr. TM to ask a million questions, make decisions (save the nipples?), and sign consents. Shit is getting real.

Once I have a better understanding of what exactly I can expect, I'll post the details. Til then, your guess is as good as mine.

Love you all!

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