Sparks of Joy

Pardon the title–I promise this isn’t about Marie Kondo.

Today I had my annual checkup with my surgical oncologist, who performed my mastectomy. It’s totally routine, but even the most ordinary of appointments can feel fraught after cancer.

Visiting my surgeon’s office is especially triggering, since it’s housed in the same building as the breast center where I had my first ultrasound and biopsy, the first moments I realized that lump was more than just a cyst. Just driving into the parking deck makes me nervous.

But today’s visit was pretty much the exact opposite of that day.

Me, my snazzy granny drape and some intestines.

After the usual intake routine, I was shown to an exam room and given one of the little drapes to cover your bare chest. These always crack me up because they look like little shawls made of the curtains from someone’s granny’s house.

But I digress.

After performing his exam, my surgeon declared everything looked and felt great–no weird bumps or lumps on my chest or my lymph nodes. Great news!

Once I was all covered up, we chatted a bit about my checkup schedules, as well as the challenges of parenting small children (he has a three-year-old).

Before leaving the room, he shook my hand and told me how much he enjoys these appintments as opposed to those first ones when things are so scary. Since the moment he happily delivered the news that my post-surgery pathology was clean (I swear I could hear him smiling through the phone that day), he’s always seemed so genuinely happy and excited to see me doing well.

I couldn’t help thinking how hard his job must be–delivering terrible news on a regular basis, coming up short sometimes no matter how hard you try (because cancer is a beast), seeing women about your age with kids around the age of yours feeling utter devastation at such a terrifying diagnosis. It has to weigh on the soul.

And even though I really have very little control over how my situation turned out, I’m glad to be able to bring him even the slightest bit of joy. Honestly, after all he’s done for me, it’s the least I could do.

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You’ve Come a Long Way, Baby

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A former colleague of mine recently got the terrible news that she has breast cancer. I’ve followed along as she shared her experiences on social media, and my heart has really ached for her this past week as she underwent a bilateral mastectomy.

Two years ago today, I was in that same position.

I remember lying in my hospital bed that night after my surgery, suffering the most intense pain I’d ever experienced, when I noticed something. The whiteboard bearing my nurse’s name and call number also held one more important bit of information: the date. November 28.

I stared at the numbers, and then I began thinking about my recovery in those terms. On the 29th I’d be a little better–maybe I’d get to go home. On the 30th I’d be a little better. And so on.

Having cancer and going through treatment really makes you slow down and take things one day at a time. That’s not easy for most of us, and honestly, it was one of the things I struggled with the most during my ordeal. But once I finally surrendered to the rhythm of cancer treatment, learning to take each day as it comes and not think too far ahead, I found the whole experience to be far more palatable.

Looking back, it’s almost unbelievable to me that each of those days have accumulated into two years. I remember when I was first diagnosed being told that treatment would be a process, but it also would be just a season in my life (providing it went well and worked, which thankfully it did). At the time, that was hard to imagine, but in retrospect, it’s true.

Yes, I definitely still deal with the after-effects of my diagnosis and treatment. Many things, like the fear and anxiety, will probably never go away. But life on the other side of this is still good. I know my former colleague still has a good bit of road ahead of her, but when I think about her (or anyone in this position), I just wish them to get to this point. It’s so hard to visualize life without chemo and surgeries and radiation when you’re in the thick of it, but it will come.

Eff Cancer

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As I mentioned in my last post, I’m in an online support group for women who’ve faced breast cancer. And in that group, one of the members was dealing with Stage IV metastatic breast cancer. Today I found out she passed away.

It’s so strange because this is a person I only knew from her posts in this group. We weren’t close. But every time she posted, my heart just ached. She was my age. She was a professional traveler, who’d zig-zagged around the globe, sharing her adventures online. From all I could infer through her words and photos, she was a vibrant, happy person.

And now she’s gone. She suffered at the end. I know this because she would vent her frustrations in our group–intense pain, swelling that made it nearly impossible to even get out of bed, debilitating fatigue.

Less than a year ago she was declared “cancer-free.” She completed her treatment. She did what she was supposed to do. And still, this shit came back. And it killed her.

Normally when I hear things like this, I am awash in grief and fear, but tonight I feel different. I’m angry. So fucking angry. If cancer were a person, I would strangle it with my bare hands right now. I would revel in squeezing the life out of it. I would laugh as it crumbled in my grip.

It’s so completely fucking unfair that this woman is gone. That so many women (and men) have been taken far too soon because of this stupid fucking disease. Not to mention all those who’ve somehow survived, yet live with the detritus that’s left behind after treatment, surgery and the mindfuck that is facing a potentially terminal illness.

I wish there was something I could do. Some way I could make this stop happening. I’m so tired of people dying needlessly. I’m so tired of worrying that I will join their ranks before I’m ready.

Fuck this disease. Fuck cancer.

Groupthink

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Not long after I was first diagnosed with breast cancer, I received a packet of information from the cancer center outlining all their various support programs for patients and survivors.

Thumbing through the pages, I discovered I now qualified for all sorts of things from free yoga and massages (sweet!) to makeup classes for chemo patients without eyebrows and eyelashes (eh).

And of course, there was a slew of support groups–general cancer support, caregiver support, prostate cancer support–the list went on and on. I noted there was even a group for young women with breast cancer and mentally made plans to attend once I had some time to wrap my mind around everything.

But as my diagnosis set in and treatment began in earnest, I found no shortage of excuses for skipping the monthly meetings. I was tired. I felt bad. My kid was sick. I had to work late.

Truthfully, my social anxiety was the main culprit keeping me from showing up. So I was thrilled when a friend invited me to join a private support group for breast cancer patients on Facebook. Through this forum, I found the means to connect with others with similar struggles without the awkwardness or time commitment of an in-person group.

I’m still a member of that group today, although sometimes I think about leaving it or at the very least hiding it.

Don’t get me wrong–it’s a fabulous group. The women are truly amazing and inspiring and so kind and supportive. It has been a valuable resource for me, and I’ve even invited others to join.

But there’s a certain level of harsh reality in a group based on a health affliction. Sometimes things don’t go well. Sometimes people die. And when they die of the disease you all have, it’s really scary.

Just this month, one member who had a full response to chemo and was moving on with her life found out her cancer has metastasized all over her body. She’s currently receiving end-stage care. She’s also my age.

Even the friend who invited me to the group had a recent scare with some mysteriously broken bones. After a bone scan she thankfully got the all-clear, but it was another reminder that I can never let down my guard.

Even though it frightens me sometimes, I will stay in the group. I can take breaks for my sanity, but just like I know I can never fully put cancer in my rear view, I can’t let these women go.

 

Finding the “Cure”

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Yesterday I read a really interesting article in The New York Times on the conflation of the “wellness” industry with medicine. The piece talked about all the current wellness fads–everything charcoal, detoxing, supplements–and how most of them have very little impact on a person’s overall health or longevity of life.

Even more concerning–because you would think it would be obvious–these things do nothing to cure or prevent disease. Yet many people believe “wellness” products and regimens can keep them cancer-free, make their arthritis go away or miraculously reverse the effects of a host of ailments.

Scrolling my Facebook feed, I’m not surprised so many people believe this malarkey. I regularly see posts about the “lies” told by “Big Pharma,” along with posts touting the ability of everything from marijuana to essential oils to treat and cure everything from anxiety to cancer.

Don’t get me wrong–I’m not totally poo-pooing alternative medicine or wellness products/practices. I’ve tried some of these things, and I think there’s merit in things outside the traditional realm of Western medicine, even if it’s just a placebo that makes me feel better mentally. And I do believe in medicinal uses for marijuana, particularly in relieving symptoms like nausea.

BUT. And this is a big but–I would never do or tout one of those wellness practices/products in place of actual medical care/medicine. Because for one thing, I am not a doctor. I have not studied or practiced medicine. Beyond personal experience and internet research, I have no knowledge of how and why certain treatments work for certain diseases.

Just thinking about breast cancer, I had no idea before being diagnosed how incredibly complex this disease is. There’s no such thing as just breast cancer–each case is different, based on a host of variables–rate of growth, hormone and protein receptors, genetic mutations. Two women with breast cancer may have completely different treatments because their cancers are different types.

Because of that, there’s no one magic bullet that cures all cancer. And to suggest that marijuana or essential oils or some yet-to-be-determined plant from a rainforest is the magical cure that everyone dreams of is at best naive, and at worst very dangerous.

Because here’s the thing–there are people who believe this stuff. They don’t do their research, and they don’t ask questions. They read something on Facebook and believe it.  And that person can be in great harm if they read that your essential oil is the only thing they need to treat their cancer.

Listen, I get it–chemo is scary, and it sucks. And sometimes it doesn’t work. But a lot of the time, it does. It did for me. And so I get a little bent out of shape when I see someone with no medical training spouting half-truths or outright lies on the internet to help sell their multi-level marketing company’s products.

It’s a slap in the face to anyone who’s undergone chemotherapy–essentially pointing out you must be an idiot to allow that “poison” into your body. And it’s discounting the years of research and work done to create these drugs and bring them to patients.

The old adage says if something seems too good to be true, it probably is. I feel like that’s more applicable than ever, and I really hope people will keep that in mind, think critically, and ask questions and demand science-based answers. And stop sharing dumb shit on the internet!

**steps off soapbox

Two Years

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Two years ago today I got the call that changed my life forever. Two years ago today I began a journey I never wanted to take. Two years ago I was diagnosed with breast cancer.

On this second “cancerversary,” I’m in a far better place than I was a year ago. I feel better. My hair is longer and more manageable. I’m not constantly gripped with anxiety.

My doctor’s appointments have tapered to once-a-year checks rather than monthly visits. I’ve grown accustomed to the side effects of Tamoxifen and menopause. I’ve settled into that “new normal” everyone kept telling me about.

I remember my oncologist telling me at one of my post-treatment appointments that there would come a time that I didn’t think about cancer every day. It would no longer be a major part of my life. At the time, that seemed inconceivable.

I still think about it every day, but it has become far less of a focus in my mind. I don’t obsess about it, constantly worrying that every little twinge or pain is recurrence or metastasis. I consult Dr. Google far less often, and I’m for the most part staying clear of the rabbit hole that is breast cancer message boards.

I haven’t forgotten, and I wouldn’t say I’m complacent, either–I don’t know that I could ever get to that point. But I am far less freaked out. And I’m much more focused on simply being healthy and living my life. My “new normal” is certainly different, but it’s sweetly normal, nonetheless.

 

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Graduation Day

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Today I had my six-month follow-up with my oncologist. This is my regular check-in with him that includes blood work and a physical exam.

While these appointments are routine, they kick my anxiety in high gear. My oncologist is very busy, so I always end up nervously playing solitaire on my phone while waiting on him to come into the exam room. Those minutes tick by very slowly–all the bad news scenarios race through my mind, and I have flashbacks of sitting in that room during my first appointment after diagnosis. I think about how hard his job is. While there’s certainly the high of literally saving people’s lives on a regular basis, he’s also the bearer of really bad news on more occasions than I’d like to imagine. It must be tough.

But today’s visit was a good one for both of us. He let me know my blood work looked great, and when I brought up the ongoing back/hip pain I’ve been experiencing for the past few months, he said arthritis or perhaps some degenerative disc pain was the likely culprit, but ordered an x-ray just to be on the safe side. While an arthritic hip would mean I’m just an AARP discount away from full-on old ladyhood, I’m really hoping that’s the problem.

As we wrapped things up, he told me I could start seeing him on a yearly basis. This is a big deal. I’ve graduated from every two weeks to every couple months to every six months, and now, just once a year. My schedule no longer revolves around cancer. My doctor’s appointments no longer fill my calendar. I feel so very…normal.

As I drove home, I had a little talk with myself. I have a bad habit of waiting for the other shoe to drop. Since my diagnosis, I’ve felt like bad news was around every corner. I’ve had some scares and disappointments, but for the most part, things turned out pretty damn well for me.

Yet the nervous Nelly inside me can’t help worrying that something bad is going to happen. The cancer will return. It will spread. I will die. I won’t be here to raise my son. This is is the fear I live with every single day.

But I realized today that I can’t keep living like this. Just like I came to terms with my diagnosis, I need to come to terms with the fact that I’m OK. Right now, I’m OK. I can’t control the future, and worrying about it isn’t going to prevent anything bad from happening.

So, that’s where I am now. I’m going to focus on living one day at a time, and today happens to be a very good day.