To Be Young and Sick

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A couple weeks ago, I met with a dear friend for coffee and catching up. After running through the latest updates on work, school and family, we got down to the nitty-gritty. What’s really going on. How we feel.

After years of respiratory issues, she was recently diagnosed with a chronic lung condition. While such a diagnosis surely brought some sense of relief and validation, not to mention treatment that has her feeling more healthy than she has in a while, it also has left her with plenty of anxiety and sadness.

I can relate. And as she shared her experiences and feelings, I nodded my head in commiseration. Sure, our conditions were different, but we both shared a common (yet uncommon) experience–dealing with serious illness at a young age.

When I was diagnosed and in treatment, I had so many tell me how lucky I was to be so young and strong. Surely my youth would see me through this. And in a way, yeah, that’s right. My young, strong body certainly equipped me to handle chemotherapy and surgery and all the other trauma of treatment better than an old, frail person.

But didn’t that young, strong body also fail me? Didn’t it betray me? Didn’t it allow me to be very sick and face my own mortality far too soon?

My friend and I shared our grief over losing trust in our bodies. It’s something a lot of people experience, but it wasn’t supposed to happen to us. Not now, at least, when we’re both still in what’s supposed to be the prime of our lives.

We also talked about the utter loneliness of being seriously ill at a young age. My friend related her experiences at the pulmonary clinic, surrounded by patients decades her senior. I knew exactly what she meant having experienced the same thing at the cancer center. While your peer group is doing totally normal things like having babies, traveling, advancing in their careers, you’re in a cycle of doctor’s appointments, trips to the pharmacy and hospital stays.

People your age can be sympathetic and kind, but they truly can’t understand how it feels to be thrust into this world of constant medical attention.

Then there’s the fear and anxiety. Being diagnosed with a serious illness at a young age casts a shadow over your life. Sure, you may be treated and be just fine. You may have clear scans and NED (no evidence of disease). But there’s always that fear lurking in the shadows that it’s going to come back. Or get worse. That the treatments that worked will fail. That the medication no longer does its job.

And when something like this happens to you at a young age, that fear seems almost amplified simply because you’ve got so much life ahead of you. There’s so much time for something to go wrong. You’ve seen the boogeyman, and you just know he’s waiting for you, but you don’t know which corner he lurks behind.

There’s never a good time to face serious illness. But to be young and sick seems especially cruel. Even if you recover (which some do not, an almost unfathomable truth), so much detritus still remains, so much is left to be dealt with. Figuring out the illness is but a first step on a long journey.

Dispatches from the Dressing Room

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When I was younger, bra shopping was a bit of a thrill. As a teenager not even close to letting a boy see anything beyond the occasional strap slip, fancy lingerie was pretty much for my own personal enjoyment, and shopping for it felt a little naughty.

As I got older, I’d make the twice-yearly pilgrimage to the mall, sidling elbow-to-elbow with other bra bargain hunters to dig through the discount bins of Victoria’s Secret’s semi-annual sale. My collection of brassieres grew to necessitate their own drawer, filled with everything from racy lace numbers to the most utilitarian of sports bras.

In my mid-30s I became a mom, and breastfeeding forever altered my lingerie drawer. Punchy pink satin bras languished in favor of more practical–and comfortable–cotton nursing bras that I’d buy in bunches while lugging my newborn around Target.

Then cancer happened. I lost my breasts (or lost them in their natural state). While I opted for reconstruction, what I’ve been left with isn’t exactly what I’d had before. Never let anyone fool you into thinking mastectomy and reconstruction equates a “free boob job” (seriously, stop saying that, people).

That’s how I found myself at the mastectomy bra shop. I actually went there before my surgery to pick up some post-mastectomy supplies (sports bras with a front closure, camisoles with pouches built in to hold surgical drain bulbs). And once I’d healed, I came back for bras to fit my new body.

Unlike Victoria’s Secret, this bra shop operates pretty much by appointment only. Also unlike VS, they take insurance. Yes, this is one fantastic perk of this otherwise pretty shitty turn of events–insurance will pay for my bras. Of course, my new insurance makes it a huge pain in the ass by only approving one bra per day, meaning I have to go to the store multiple times to pick up my allotment one at a time (I’m trying not to complain about getting a bunch of bras for a small co-pay, but it is kind of annoying).

Being at the store is a strange experience. Just like at the cancer center, I’m usually the youngest person in the room, other than the sales staff. I sometimes think the salespeople enjoy that because they get to bring out all the fun, brightly colored, more youthful styles.

In the old days, the thought of someone joining me in the dressing room as I tried on bras would have sent me running for the door. But in this post-cancer world, such indignities don’t even phase me. That’s good, because trying on bras at the mastectomy shop is never a solo experience.

A very kind, sensitive woman helps me figure out what bras will work for my body. She brings me armfuls of different styles and sizes to try, and offers gel inserts to help me fill them out (lots of talk about how I don’t have an “apex”). Yes, even though I’ve gotten implants and fat grafting to help fill me out, the shape is different, and kind of weird. Because all of my breast tissue was removed, there’s a flatness to my chest above the implant, and there are also slight indentations where the grafted fat didn’t take (yeah, that happens).

It’s a long process to find bras that fit my weird shape and look and feel good. And while the saleslady does an excellent job of trying to make it as fun as possible for me, there’s still something uncomfortable and a little depressing about the process. It’s just another one of those moments where I ask myself, “Is this really my life? Is this really my body?”

Body image is one of the biggest struggles for breast cancer survivors. Even if you have reconstruction, it’s never perfect or exactly like what you had before. And you’re left with scars and all sorts of other physical reminders of the trauma you’ve been through. One the one hand, these things remind me how strong I am and what I’m capable of enduring. But on the other, they’re constant reminders that I’m different, both inside and out.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Eighteen

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The strangest thing happened today.

It’s Easter, so we rose relatively early this morning to see if the bunny visited our house last night (he did). We enjoyed a leisurely breakfast. We played outside in the balmy spring sun with my son’s new Easter goodies.

It wasn’t until late in the morning when I checked Facebook on my phone that it hit me–today is April 1.

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This photo showed up in my feed via the “On This Day” feature. Of course, I shared this two years ago today. It’s April 1, the day my mom died.

For the last 17 years, I’ve dreaded this day. This box on the calendar, with its power to transport me to the past, to the single worst day of my life (yes, even trumping the day of my diagnosis). This date that changed my life and my family forever.

But this morning, I spent hours blissfully unaware. I blame the fact that Easter fell on April 1 this year, providing a happy distraction. For a few moments, it felt like just another day, and not a reminder of what I’ve lost.

I think this would make my mother happy. I think she’d smile seeing me play with my son, enjoying every moment of his joy over his Easter basket, and my elation at being able to provide that joy.

I think she’d be thrilled to see me spending part of this day at my in-laws’ house, sitting in the sun with my mother-in-law, who loves me like one of her own. I think it would do her heart good to know that I have these incredible people–who’ve welcomed not only me, but my entire family into theirs–in my life.

Briefly forgetting what today is doesn’t say anything about my grief or how much I still miss my mother. What it does remind me is how incredibly blessed I am to have this family and this life that can produce enough joy to, even if momentarily, blot out the searing pain of her loss. I think that’s something that would make her very happy, indeed.