Vulnerability

I've been thinking a lot these days about vulnerability and what that means. Some of my newer friends recently found this blog (you know who you are) and I found myself slightly panicky about it. Do they know me well enough to handle my "crazy"?

We selectively share on the internet. We project what we want people to see and hide what we don't. With this blog, I thought I was being transparent. This has always been a place for me to share my worries and fears. When this blog came back up in conversation, I re-read it (mostly because I knew a few people were ALSO reading it and…well, see "panicky" up above). I thought I had shared more, but it turns out even though I set out to be somewhat transparent, I still hid a bunch of things. The pain I felt every day for 7 months while I had a gaping wound from a failed mastectomy. The frustration at not feeling like a person let alone a woman. I felt empty inside—so sick and tired of fighting that most days it was all I could do to wake up and put one foot in front of the other. But no one saw that. Because I'm really fucking good at hiding my pain and putting on a "brave face" and doing what needs to be done because if I don't...? 

Brene Brown describes vulnerability as feeling like "...taking off the mask and hoping the real me isn't too disappointing." 

In school, we talked a lot about "compartmentalization". If you go wiki this, it is different for therapists than for clients. For therapists, compartmentalization is when we take our own fears, insecurities, anxieties, preconceived notions, etc. and we put them "in our back pockets". We tuck them away outside the session door so we are blank and reflective spaces for our clients. We can be mirrors and help them determine what they need to feel better. Then, after session, we are supposed to take our feelings out and examine them ourselves. This sounds great, right? The problem comes when we are unable to take our feelings out. I have gotten remarkably good at tucking my own feelings away—so good that I very rarely truly examine them. Honestly? I tell people all.day.long. to talk about their feelings and examine why they feel the way they do or act in ways they act. I am a HUGE HYPOCRITE (and to all the therapists reading this—don't front. I am not alone in this).

So, why am I sitting here, talking about vulnerability and emotions? This is the 8th (I think? I can't even keep track anymore) surgery I've had in 4 years. The only thing that gets better is the friends. Time and again, people have showed up and helped us through this. And each time, there has been more love and support (which is frankly a pretty impressive amount to begin with). So, I'm being vulnerable because you've earned it. Through your love and support, you've earned the right for me to be really honest about all of this. About how much this sucks and how fucking terrified I am. About how logically I know that I will be okay, but that doesn't stop me from worrying about dying. About how it would be hard enough for Neil and the boys to lose me, but that it would be exponentially more devastating to lose me at Christmas.

Even in sharing this--if I take off the mask and show you all of my feelings and faults, will I be a disappointment? Will you be shocked to know that I am not, in fact, Wonder Woman? That even while I am strong I can also be fragile? Will it be difficult for me to not worry that our every interaction will be clouded by the very knowledge that I have shared my vulnerabilities in such a public and open way? This is my Pandora's box--once these things are out, they can never be put back. Ultimately, though...without my vulnerability, you are only seeing the pretend version of me.

Again and again and again

So, look at that! I'm blogging again. Must mean it's time for some crazy-cancer related treatment.

I was scheduled to have my final(?) reconstructive surgery next Thursday. But an impromptu message to my plastic surgeon showed a glitch in the matrix--seems like he has a vacation of some kind to go on and my surgery was cancelled. What in the ever loving fuck is that? Thanks for the call, assholes...

In an effort to not have to pay $3k out of pocket, I begged and pleaded to get another date before the end of the year. Just so happens that it is this Friday. So yay/boo. My surgery is for 9am on 12.23.16. Neil will log into my FB and update you to let you know how I'm doing (because he is one man and having him text all friends/family is not happening. Too much to ask anyone). I'm supposed to be in and out--no overnight. We'll see how that flies because I am a HUGE BABY when it comes to pain tolerance. I do not want to have to go to the ER in the middle of the night because I can't get on top of my pain (which has happened previously, so it's not #unprecedented*).

I will be out of work for at least 3-4 weeks (so all of January). I don't know if you guys know this but...I'm kind-of an extrovert ((gasp! Wut?! No way!)). Gina suggested that in lieu of a meal schedule a "visit" schedule be created. So--if you wanna come visit me at some point, let me know. Or, hit me up on messenger. Lord knows there's only so much daytime TV and Netflix I can binge-watch...Also, I will accept book suggestions or loans. 

I have another post I've been working on for a few days that I'll post tomorrow. Thanks to everyone for the love. It's truly appreciated. 

*That will not get old for awhile. Seriously, I am more amused than I care to admit by that. 

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 

A new message for a new year.

A year ago, I sat here and implored the World:

Dear World: Tomorrow I bequeath to you my eldest son. Please be gentle with him. Tonight he sleeps, unaware of most of life's harsh realities. That sometimes people are cruel and that life is unfair. That decisions are difficult and rarely have quick and easy answers. And that he will sometimes make the wrong decisions and have to pay those penalties. World, all I ask is that you are kind and mitigate these things--that whenever there are cruelties there are people there, who can offer a kind word or a shoulder to cry on. That difficult decisions can be made, sometimes alone but often with allies. And that mistakes can often be fixed and aren't tragedies--but things to learn from. World, tonight my eldest son sleeps the excited, anticipatory sleep that comes before exciting adventures. Please be kind to him tomorrow and all the days forward.

How little I knew then. How little I suspected that it wasn't the harsh realities of peers in his classroom, but cruel sickness that would change his life. I look at the picture I took of him for his kindergarten year and I feel a longing. I long for a time before cancer, when everything was simpler and we were all a bit more innocent.

A year ago, I wasn't diagnosed. A year ago, we were carefree and neither of these beautiful children knew what cancer was or what it would be like to have a sick mom. The eldest is now intimately aware that life is unfair and sometimes the World is unkind.

Thankfully, the World did mitigate some of these things. The biggest little was blessed with wonderful teachers who were kind, thoughtful and funny. They cared about him (and really, all of us); they looked out for him in the school and helped him achieve his goals. We got to experience community and have wonderful family and friends rally around us during it all.

 Tonight, I have a new message for the world:

Dear World: Tomorrow I shall again send you my eldest son. You have asked a lot of him these last 12 months. You have asked that he become braver than ever and in return, you have taken a piece of his innocence. He will never again know a world where he will be ignorant of a parent's illness or the fear of watching his parent in pain. But, you've also helped to show him that during the worst times, there are those that he can rely on. You've shown him that even when it's hard, there can be normalcy. And we can persevere. You've taught him empathy, altruism and shown him that he is loved. Even though the last year was overshadowed by illness, I'm grateful that it's been tempered by kindness and love. World, tonight he again sleeps the excited, anticipatory sleep that comes before a new adventure. Please continue to be kind to him, for he is precious. 

The gratitude of normalcy

Completed my first week of infusion on Friday. 1 down, 5 1/2 to go! I also went to infusion on Friday. Things are progressing well. Because I continue to have the weird side effects, we've decided to discontinue the Tamoxifen (the anti-estrogen drug that helps prevent recurrent cancer) for awhile.

This weekend, we were lucky enough to have tons of family and friends come over to help with our massive home improvement project--taking up half the concrete pad on the side of our house. I chose to not do any of the heavy lifting or concrete bashing for fear of wrecking myself. But we had 7 people altogether come over and donate their time and energy to help. And we feel so lucky to have such great friends!

This weekend marked a turn for me. Even though I wasn't able to help with the manual labor, I was able to help take care of people and things. I haven't been able to do this for nearly a year. I can't tell you how awesome it felt to do something as simple as make a sandwich or play with the kiddos (or as complex as make the beer run)!

The next day, I even had enough energy to run out to the Falls (first time I've been since I moved here 14 years ago!) and just be with my family.

So, a big thanks to all that helped around the house and provided me with an opportunity to feel somewhat normal again: Neil, Brian, Reiko (who jack hammered like a pro!!), Ryan, Shannon, Levi, Tou and of course, Jason! I love you all!