Friday, February 13, 2015

Welcome to your life, there's no turning back...

Two posts in a row. Can you freaking believe it? Maybe it's some weird Friday the 13th ritual.

The journey starting from pulling out of my driveway and finally turning back into my driveway after seeing McDicky was over 5 hours. Yep, 5 hours.

That's the price to pay for a good rheumatologist. Although, he really needs to make sure his Wifi is working, because it's agonizing sitting there for that long with no Wifi.

Yeah, yeah, first world problems.

He finally comes in, we talk, he looks at my library of rash photos, checks out my joints, my thinning hair, goes to my chart to see the results of my blood work, and I exclaimed...

Guess what?!? I got a fever, and the only prescription is more cowbell!

Turns out I was wrong. The only prescription is more steroids. For the next two weeks I will be taking 4 times my current dose, so it will be 16mg of medrol (the equivalent of 20mg prednisone) a day, and I'll increase my oral chemo. In two weeks I'll restart my infusion, and can taper the steroids.

Why can't the prescription be three shots of whiskey and an intense, sweaty night with Adam Levine? Or Charlie Hunnam if Adam's busy?

I finally just lost the 50 pounds of steroid weight, fitting into my size 0 jeans and I have to increase the fat pills steroids. Blasphemy. The struggle is real, folks.

So yes, my lupus is indeed flaring. Why, no one knows. Perhaps it was jealous of all the attention my boobs were getting.

MarlaJan: So, I have a rash on my right breast, and my plastic surgeon has completely ruled out that it is not an infection. She even put me on antibiotics to put everyone at ease. Do you want to take a look and make sure lupus isn't trying to eat this tissue expander?
McDicky: (taken aback) Sure....
YoursTruly: Oh c'mon, I've had 4 heart surgeries, a double mastectomy, and I worked at Hooters in college. I'm pretty sure the entire free world has seen at least some portion of my boobs. We're all medical professionals here! (rips down shirt)

It was his lucky day if you ask me.

The rash looks exactly like the rest of the rashes on my body, so McDicky's expert opinion calls lupus. No concern that it was eating the tissue expander, it just seems to be another place on my body where the rash landed.

More steroids for 2 weeks. I'm going to be a puffy, hangry, hairy, manic, crazy insomniac.

True story.

Bring it, bitch.

While I was writing this my dad called to check in. I can tell my mom a lot, but I am a Daddy's Girl. You know, my voice goes up 3 octaves when we talk... "Hi Daddy!"

He said he read my blog, and wished he could take the pain and go for my infusions if he could. As I held back tears, I reminded him he's been through enough.

MarlaJan: Daddy, I think you've endured plenty. We're Wexler's, we got this!
Daddy: You know when I tell people what I've been through, they don't believe me. Heart attack, debilitating asthma, prostate cancer, Chronic lymphocytic leukemia..."
MarlaJan: What the fuck is wrong with our gene pool?!?!?!

We laugh and talk about everything our family has survived, and try to figure out who exactly fucked up our gene pool.

So, as I begrudgingly take my increased dose of steroids for the next two weeks, I just have to remember that I'm a Wexler. Being a warrior is in my genes.

post signature

Linking up with Amanda for Friday's Favorites

Thursday, February 12, 2015

So, so what? I am a rockstar!

Right when it seemed my marriage to Steve was plummeting it coincided when Pink's So What? became extremely popular on the radio. I love her music, and I loved how she was able to sing her (soon-to-be-ex) husband a song full of snark, yet full of emotion on how he let her down when the going got tough. And the fact she was clearly going through similar issues in her marriage the same time as me? Fate. One of my old roommates went to high school with Pink, so it was like we were somehow connected through song and 6 degrees of separation. Kindred spirits.

In my head it appeared so.

That song was my anthem, and when I moved out for awhile, I listened to it non-stop. I danced my little heart out with my hands in air when it played in the bars, it was on constant repeat on my iPod as I ambled through the city streets (I stayed with a friend and her husband who live in Philly), and one day when both Melissa and her husband were at work, I was blasting it singing at the top of my lungs, only to open the bedroom door to use the bathroom, and realize Chris was home.


At the time when I thought my marriage was about to meet its' maker, this song empowered me. I wouldn't have been quite so snarky had I written a song myself (yeah, I would), but I loved that no matter what happened, through all the hurt, the anger, failed marriage and all, even though you could tell it's not what she truly wanted, she was going to be OK. And that was all I wanted and needed to realize for myself; that I was going to be OK.

It was a relief to come to the realization, that had it come to that point, I would be able to stand on my own two feet and get by alone. I had a successful career, a bit of savings, and plenty of framily to help when I stumbled.

As you all know, Steve and I realized that we wanted to stumble along through life together, rather than stumble apart. There was still so much good there, but it tends to get swept under the rug when the bad is staring you in the face.

We are three weeks shy of our 7th anniversary. We stumble. We fall. We let each other down. We get back up, sometimes needing the help of family to help put the pieces together.  That's life, really. He still does things that irritate the hell out of me, and I know he can say the same about me. I'm loud and fight dirty outspoken, and he avoids confrontation at all costs. That's never going to change, and all we can do is let it make us or break us. Or maybe he could stop doing the things that drive me insane.

Being the chronically ill and infertile wife to a man who deserves all the wonderful things life has to offer is agonizing. We had so many plans, big dreams, and I often feel that his life would be less burdensome if he were with a woman who is the picture of health. It's a weird thing to feel guilty about. I can't change the path my health has taken, and there's no one to blame (but seriously Mom & Dad, what was in the Philly water you both grew up drinking?). I only wish Steve and I had more than a mere three weeks of "normal" newlywed bliss before I got sick.

Our "normal" has become waking up on Saturday wondering if it's going to be a good or bad lupus day for me, leaving him to go out and about alone if we are faced with a bad day. There are a lot of bad days. It's him watching me attempt to hold back tears as I open another baby shower invitation. It's my pretending not to notice his aggravation that a day at the beach for us is not what it once was. Or his disbelief that I am STILL in bed at 6pm when he gets home from work. It's being nervous to book vacations because we don't know where I'll be health wise that far in advance. It's wondering what the weekly doctor appointments and blood work is going to tell us next. It's knowing I'll be on chemotherapy for the rest of my life. It's the not knowing, but having it looming over our heads every. single. day.

Per usual, I'm going to say something that I should probably keep to myself, but I'd be selling myself short if I hit the proverbial mute button. Get judgey, be insulted, but this is me, and this is how I feel, and have felt since I realized almost 7 years ago that this lupus thing was never going to go away.

Just a little lupus humor

I get jealous of the people who get to return to his or her life pre illness, accident, catastrophe, etc... I realize how horrible this may read, and I'm certainly not downplaying anyone's journey through hard times. Everyone is fighting some type of battle, I just have this longing to have a day when I can say my battle is behind me. Even on my good days, I'm reminded of this ongoing war when I swallow a million pills so I can function. I may not let my illnesses control me, but the truth is, they will always be one step ahead, waiting for me to step on the land mine.

This sounds whiny, and you know how I feel about whiny. Hard is hard, every couple has their issues, and no one's journey is any less difficult than the two people next to them. Steve and I make the most of this life, we're grateful for the good days and the bad days where I slap on some makeup, suck up the pain and enjoy a night out with friends (or whatever we decide to do). I sometimes wish it could all be a little less... complicated

Over the past two weeks my lupus has started to significantly flare again. My body is doing things that it hasn't done in years, having symptoms that I haven't had since my initial flare after we returned from our honeymoon a little less than seven years ago.

It's scary and frustrating. In October I was putting McDicky on a pedestal for being aggressive with my treatments, to getting me off high dose steroids and onto a medication regimen that finally worked. I lost the steroid weight, and I was feeling good. Yet somehow, without even knowing, I stepped on a land mine.

Initial lupus flare circa March 2008
Can't accuse me of being too sexy

Lupus flare circa Tuesday night 2/10/15
Yes, it's as uncomfortable as it looks. My entire body was covered in giant welts.

2/9/2015 No lip injections needed, lupus does the job for me.

My long lost sister?

Steve isn't forthcoming with his feelings when I ask him how he feels about my being infertile, and how it affects him after we fully intended to have children when we got married (yes, I know there are many ways of having a child, that is a post for another day. please keep your "but you can adopt!" comments to yourself). I look at him with our nieces an nephews and our friends' children, and can see what a good father he would be. Steve has said what a good father he would be. At times I feel inadequate, like less of a woman because I can't give him that.

But on Tuesday night as Steve watched me run around the house, in agonizing pain, trying to literally jump out of my skin, he looked so defeated. He tried to get me to calm down, to divert my attention to the Flyers game (they lost... womp womp), as 75mg of Benedryl, steroids, Zyrtec and painkillers did nothing. He'd get me to sit still and rub my back, and within minutes I was back to running around the house in a manic state.

Steve looked sad, worried, confused, ready to hop in the car and head to the ER. He turned to me and said "I don't get it, I thought we were past this."

And that broke my heart.

In a few hours I'll be in McDicky's office trying to figure out just why my body has decided to retaliate against me once again. I'm sure it was nothing I did, but lupus's way of showing me exactly who is boss. That just when you think you've gained the upper hand, lupus is there to remind me exactly who is in control.

Wish me luck at McDicky's.

Writer's note: Pink and her husband Cary Hart are still married. They too realized there was more good than bad. Perhaps we're kindred spirits after all. 

post signature

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

post signature

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.

post signature

Linking up with the Let's Be Friends Blog Hop