In the stillness

In the stillness, I hear how my house breathes. I hear the gravely snores of the pup, curled sweetly on the couch. I hear the tick-tock of the clock, counting down the minutes before I leave once more.

Further and faintly I hear the nighttime cries of my youngest. Cries of pain, cries of sadness. The soft sighs of my eldest, as he dreams; his dreams are mysteries not even he will remember.

Further still, I hear the familiar sounds of my husband. Tossing, turning, lightly sleeping. Escaping into sleep while he still can.

I hear the sounds of my keyboard. My fingers compete with the ticking of the clock, both racing the night away. Too fearful to sleep; too tired to complete the necessary tasks. If they remain uncompleted, that means the night will never end; the day will never dawn; I will not have to worry any longer.

But I know morning will come. My beloved will come down the stairs, take me into his arms and escort me to another horror. Not because he wants me to suffer it; because he doesn't want me to suffer it alone.

So this night will pass, with tick-tocks and click-clacks. I will be fearful but hopeful. Remember, if you are reading this, I love you.

Brave and quiet

I haven't updated this for nearly a year. That means that most of you are either intimately aware of the struggles of the last year or really have no idea.

For a therapist, you'd think I would be better about these things...do as I say, not as I do, I guess.

Here's the short of it: I had my real-fake boob put in on April 2nd, 2015. Little did I know that April Fools missed a day. The surgery went fine, I went home and I had few complications. I had some weird drainage and saw the Resident a few days after discharge. My plastic surgeon was traveling or some crazy shit. Anyway, the Res was eager to rule out an infection and wheeled me into the Breast Center Radiology Clinic. They drew a sample and inadvertantly gave me MRSA in the process. A week later, I was in the ER with a fever; two days later, I had emergency surgery to remove the implant I had fucking earned. That was mid-April. I still have a hole in my chest from where they took the implant...I'll wait for you to check the date I'm posting this (10.30.15). Yes, I've had a hole in my chest for 6 1/2 months.

I'm going in for another surgery at the end of November. This time, they'll take a piece of my back, coupled with some muscle and attempt to create some sort of Franken-boob. I'll be hospitalized for a few days but should be okay by Christmas. Depending on how this surgery goes, I may need to have 1-2 more surgeries before everything is complete.

It's been just over 2 years since I was diagnosed and started treatment (I had my port placed the end of Oct, 2013--chemo started shortly thereafter). People are constantly asking me why I'm going through with this additional surgery given everything that I and my family have been through. Some of you may even think I'm being vain for wanting to get this surgery.

I am not.

I am desperate to feel normal again. For the 10 days I had a boob that wasn't trying to kill me, I felt so much more like my old self. I was fine with losing my hair. Shit, I used my bald-head as a sensory intervention for dysregulated kids! But to have only one boob and a fucking hole in my body that won't heal and constantly hurts?! It's like a kick in the fucking face. Also--I'd like to point out that this was because of a stupid medical error--much like the one that caused my father to have his leg amputated when I was near Vaughn's age. Not exactly the best trans-generational pattern to be repeating.

I'm terrified, friends. I hate surgery. I'm scared that this won't work and that I may ultimately die. And I'm afraid that people will think that this is needless and vanity-fueled. But it isn't. I'm trying to reclaim who I was and determine who I will be.

TossBack Thursday

Okay, I'll admit it. I suck at keeping people up to date with this thing. The reasons are varied, but mostly venture into the "excuse" territory. 

When last we met, dear blogosphere, I was approaching the anniversary of my diagnosis as well as the beginning of another school year. We have now approached another anniversary. A year ago last week, I "lost" my hair.

 

This single moment (as well as the beautiful photography from Dina Goldstein) is one of the single most memorable of all the moments. I may pretend to be an open book my friends, but it is not easy for me to be vulnerable. Last year, I was brave and terrified; strong and vulnerable. I've learned and experienced so much over the last year. I've learned that having a completely bald head is terribly cold during a Minnesota winter; I've learned that I'm stronger than I ever thought possible and I've learned that it's okay to ask for help (which is something that I've always known and advocated for, but damn if I'm not a hypocrite sometimes--I can be a "do as I say, not as I do sort of gal"--shocking, no?). 

March, 2014

I've also learned more about myself over the past year +. If I haven't reached out to talk to you about my diagnosis, please don't think it's because I don't want to share. I'll answer any question--but it's incredibly hard for *me* to reach out and initiate. Partly because I lean towards being verbose and partly because...I want to be seen as more than my diagnosis. 

I've been called many things in my life, but the thing that's been most difficult to hear? "Strong". What you see on the outside is not always what it is inside. I think this is where my education has done me wrong...I have gotten really, really good at putting things away and only exploring my feelings when...shit. That's a lie. For a long time, I tried just never exploring them. It was too hard, too scary, too much. Over the past year, I've worked hard to be more aware and to talk more. Sharing is hard but I'm surrounded by incredible people who will catch me when I stumble. 

Damn you all for introducing me to Firefly...

So, what's next? I wish I knew. I'm generally reluctant to talk about these things because...see above. I honestly don't know what's next. The infusions (not quite chemo, but kind-of? IDK how to describe it--but the meds are Herceptin and Perjeta if you are interested to look them up) can really mess up your heart. Thus, they require a lot of monitoring. My heart was fine until this last echocardiogram--I had an EF of 65% previously (normal). But, suddenly, it was down to 45% (not good). Typically, hearts recover *just fine* after these infusions/chemo. I have been far, far from the typical case. So, we hold my infusion and we are currently in a wait-and-see mode. The way I see it, there are 3 things that could happen at my next appt (2.6): 

1. A repeat echo shows minimal improvement; they stop all treatments. 

2. A repeat echo shows some improvement; they give me 1 final treatment. 

3. A repeat echo shows some improvement; they give me 2 treatments. 

I have no idea how this will all go. I have a msg into the doctor. I've been reluctant to share this information with people, partially because I'd rather have all the information before passing it along to others. I'm a questioning sort of gal--I'd like to be able to provide all the answers. I hate "I don't know". 

I have also tentatively scheduled my real-pretend-boob surgery for April 2nd. When I saw my plastic surgeon this week (Dr. Cunningham), I asked if he had heard about the woman who had a goodbye party for her boobs, pre-mastectomy (he hadn't). 

"Why didn't I do that?!" I lamented.

"I don't know! It seems like something you would've done," he replied. "What did they do? Have boob cake?!"

"Nope, boob cupcakes"

"You could still do that...bring cupcakes to the OR! We'll have a party."

So, just in case you were wondering about the kind of care I get from my doctors...know that they're willing to have a goodbye party for my broken boob in April. 

Yeah...we're all going to be just fine. 

PS: A very, very big thank you to all who have donated over the past year. The money, food and gift cards you have given has allowed us to pay some of my medical bills! It's so very appreciated. I hope you all know that.

<3,

Mary