Friday, March 13, 2015

Just a day, just an ordinary day...

TGIF! It's the second Friday the 13th in a row, which doesn't happen too often. And neither does my blogging these days, so I wanted to give it a go.

I met with my plastic surgeon yesterday so she could ensure the infection was cleared up in my left breast. I spent all week nervous and hitting up The Googles trying to find different complications due to breast tissue expanders.

I would not advise this.

Even though each expander is instilled with 450ml of saline, my left breast is significantly bigger than the right. In my google search, I repeatedly read about capsular contracture, a common complication of breast reconstruction surgery. As with any foreign object surgically placed in the body (tissue expanders, implants, hip prosthetics), our bodies naturally form scar tissue around the foreign object, and that scar tissue is referred to as a capsule.

Most often, the capsule is a thin, soft layer of scar tissue that is not detectable. But, in some cases, the capsule hardens and contracts around the foreign object causing increased tightness and pain. In my case, I felt this was happening around my left expander. That breast was larger, everything felt tighter and I was experiencing increased pain on the left side.

Every night this week before bed, I would take my shirt off, stare in the mirror and go to second base with myself.

MarlaJan: Hey babe, does my left boob look bigger than the right?
Steve: Yes.
MarlaJan: I think I have a capsular contracture.
Steve: A what?
MarlaJan: (rolls eyes) Nevermind. (continues to manhandle breasts)
Steve: Wasn't your left one always bigger before all this? Maybe your left boob is destined to be bigger.
MarlaJan: Um.... ask yourself if you're being helpful.

As soon as Dr. Fahey walked into the exam room and asked how I was feeling, I expressed my concerns that I developed a contracture in my left breast. She looked me over, examined each breast (ie- felt me up), and used her magnet to access my magnaboob port and check for any excess fluid.

No fluid. Hoooray!!

She assured me that everything looked and felt great, the infection cleared up, she saw no signs of my developing capsular contracture, and sometimes during the expansion process, the breasts can become asymmetric.

But why so much pain? Why does it feel so tight?

The nurse in me wanted a much more scientific answer than "you have two foreign objects where your breasts used to be filled to their max capacity with saline to stretch your skin and muscles I cut away from your chest wall. It's going to feel tight and cause pain"

Hmph. Well, that sounds.... logical.

I wonder if my mother was this annoying when I had all my heart surgeries. Probably not.

The next step in this process is to wait for my muscles to get used to their new home, and begin looking at dates for my second surgery. Due to the few setbacks I've experienced, I was prepared to have to wait much longer that originally anticipated. When the mastectomy was first scheduled, Dr. Fahey had figured surgery two would be around the end of March, but after the week-long hospital stay due to the seroma and infection, she had mentioned waiting until mid May to early June.

While I'm not a typical oncology/breast cancer patient, I'm still not a typical healthy woman who chose to have a preventative mastectomy. Dr. Fahey has decided than rather wait, we go ahead with the surgery sooner rather than later. Obviously she wouldn't do it too early, or put me at risk where my muscles or the pocket formed for the permanent implant could damage the integrity of the implant, but her thought is than rather keep the expanders in longer, causing me "stress" which can trigger another lupus flare, get them out, and get me comfortable with implants.

She brought in two implants for me to play with; silicone (a cohesive gel which is often referred to as a gummy bear implant), and saline. I prefer the feel of the silicone, they feel like natural breast tissue, and less dense than the saline. There are conflicting reports that women with autoimmune disease, specifically lupus, should not get the silicone implants. When I spoke to McDicky late last summer, he assured me there is absolutely no scientific evidence in those reports, and that he is fine with me choosing the silicone. Of course, I'm still in my head about it, hitting the Googles, and then quickly regretting reading any articles.

Who else can say they got to feel some fake hooties yesterday?

In two weeks I'll be due for another chemo infusion and see McDicky immediately after, so him and I can discuss the surgery.

That's about all I've got left in me for today. Have a fantastic weekend. Sunday is the birthday of one of my favorite blog friends turned real life friend, Stephanie! Happy HAPPY birthday, my love!!!

Love you all <3

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Wednesday, March 11, 2015

If you don't expect too much from me, you might not be let down...

Yeah, yeah, I suck at this blogging thing. Tell me something I don't know.

Where to begin? Daylight savings. As much as I loooove having more time with the sun, I don't understand how losing one measly little hour can throw my system completely for a loop. Since Sunday, I haven't been able to decipher which end is up, and all the hot, caffeinated deliciousness in the world isn't helping.

Made it through the 2 weeks of increased methylprednisolone without causing bodily harm to anyone in my path. I asked Steve how I was, and he was happily surprised there were no major steroid induced meltdowns. My oral methotrexate was increased, and I found myself nauseas all the live long day. Steroid munchies and chemo nausea is a weird combo.

I restarted my chemo infusions almost two weeks ago, and holy hell, it felt like the first time all over again. I threw up, I was having considerable bone and muscle pain, and I spent two days in a row in my warm bed hiding from the world.

Whhhhheeeeeeee! Poison!!!!!

Last Thursday I had my final tissue expansion for my breasts. I'm carrying around 450ml of saline in each of these bad boys, and now all that's left to do is wait until my muscles are ready for the permanent implants.

I've expressed before that the expansion process has NOT been an easy or pleasant experience. Aside from how it's affected me mentally (hold your jokes, please), the physical pain has been excruciating. There is no give, and they don't move an inch. In certain positions it's hard to breathe because of the pressure they put on my chest. There have been many tears shed, lots of frustration, and too much time playing Devil's Advocate. At times I've needed Steve to get me off the couch, and I sat on the phone crying in Brie's ear, because I was in too much pain to actually talk. Or, we will text about how fucking miserable I've been.

I'm such a pleasure to have a conversation with these days.

This isn't the best infographic, but it will do to explain the process.

Left- normal breast before mastectomy
Center- breast tissue is removed and the pectoralis major is separated from the chest wall to accomodate the tissue expander.
Right- tissue expander is placed behind the pectoralis. The purple half-circle represents the port that is accessed to instill normal saline. The surgeon uses magnets to pinpoint the exact location of where to put the needle in the port. Yep. I've got magnetic hooties. And don't think for one second I haven't grabbed some off the fridge, and stuck them on my foobs. 
"Look, Steve! I'm magnetic!"

This is NOT me, but is essentially what my chest looks like fully expanded, give or take a few mL's. Boulder Boobs. They don't move an inch, and it pretty much feels like the expanders are dry humping my ribcage. 

Somewhere in between all this, I caught the stomach virus that has been running rampant in these parts, and my head and ass got up close and personal with the toilet. I had a few of those "oh fuck!" moments where I wasn't sure which end should be aimed at the toilet bowl. Fun times.

Oh yeah, I also found myself with another breast infection, this time in my left breast, and was prescribed another 10 day course of antibiotics. Thankfully, it was nothing that needed hospital attention, the plastic surgeon aspirated fluid from around the breast expander to send off for cultures. But, I became emotional in the exam room, once again, wondering what I did wrong. She assured me that even though I'm not a typical oncology patient, the amount of chemo/immunosupressants I'm taking for lupus makes me just as susceptible to infections. Unfortunately, it happens. I love my plastic surgeon, she's not all hearts and flowers (which I prefer), but when I need a hug, she knows the exact time to give me one.

You know me, I've managed to not be all pouty faced these last few weeks, and I've managed a few fun nights out. Last weekend was Steve's birthday, and we had a Friend's Dinner at a local BYO to celebrate. The food was delish (what i could stomach), and then we went to a bar around the corner so Steve and our friends could throw back a few to celebrate his birth. I played DD so he could let loose any enjoy himself. And by "let loose" I mean we were home by 12:30. 

The week  before was our 7 year anniversary. 7 years- it feels like forever. Steve surprised me with A NEW CARRRR!!!!!!

Pretty much what I looked like

Then we had a romantic dinner at our favorite restaurant in Philly. We got to talking how the last 3 years have been a roller coaster (oh, let's be real, our entire marriage has been a roller coaster), and we both laughed and said at least I keep things interesting. I tried not to dwell on the things that won't happen for us, and just relax and enjoy the life we have built together. 

The evolution of lupus hair loss and prednisone, as depicted by anniversary pictures.

There are a few projects I've committed to, and I still haven't gotten the chance to get them up and running. Aside from the mastectomy itself, this winter was a doozie, and I am happily awaiting the return of warmer days, so I can feel better and get to work.

It's evident that blogging regularly isn't in the cards for the time being, so I'm going to make it a point to have at least some type of presence on my Luck Fupus Facebook page, and post something daily, whether it be an info graphic or a lupus based article. I hate leaving you guys hanging, but I do always appreciate the emails checking in. I feel like only posting once a month is not doing my part to raise awareness. 

And because all of you have stuck by me as I fell off the radar, I'm pairing up with my favorite local Philly gals for a giveaway! 

MeriMint is the creation of Meri Dorfner, a Philadelphia-area artist (and my cousin)! MeriMint showcases her love of arts and crafts, creating handmade jewelry, fashion accessories, and home goods made from upcycled clothing and other media to form her gorgeous Etsy line!

Meri is offering a fantastic giveaway for all our readers....
  • a $30 gift card to the MeriMint Shop
  • a custom-designed piece from Meri
  • a $10 donation to the charity of your choice, because there's nothing like giving back!
The giveaway ends at 11:59pm March 18th! Good luck, and thanks to Meri, Brie (my sister), and the other gals who are participating. Good luck!!!!

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Linking up with Shanna

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.

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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. 

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