The “Collateral Damage” of Cancer Treatment

I’m going to tell you a story about sea anemones, and I swear it has a point. Please bear with me.

During my cancer treatment, Bear got us a 5 gallon saltwater aquarium. One of the inhabitants was a beautiful sea anemone, which I paid $25 for, but turned out to be a more rare rainbow bubble tip anemone worth around $75. Yes, I know, I basically won the lottery — try to contain your envy.

A fun fact about anemones is that they reproduce by splitting in half (like cells, come to think of it). One day during dinner, I saw that my one anemone was now two. And when we moved in July, one of them split again, and suddenly we had three. Each time this happened, I was thrilled. They are beautiful and fascinating and are a safe haven for our clown fish, Lucy.

Recently I had a dream that I woke up one morning to discover that my three anemones had split into five.

I often get messages in dreams, and this one felt like a sign of good things to come. I had an overwhelming sense that I would be in the right place at the right time. And over the last month or so, that’s come to fruition: I’ve gotten just the right information at the exact time I needed it. I went to a quiet retreat for cancer survivors in Sonoma, and a conference for breast cancer in Texas. And when I got home from Texas, I found four anemones instead of three.

The truth is, I have been quiet because I have been struggling. I have been struggling with the things most cancer “survivors” struggle with: figuring out how to live life after cancer with a host of side effects and some semblance of self-care and balance. Reducing my stress level is necessary for my continued health, and since I went back to work full-time, I haven’t been able to figure out how to achieve that balance.

Despite my boss’ effort to give me a single project rather than all of my responsibilities as a Marketing Director back, I still struggle with anxiety, confusion, lack of focus and an inability to organize. These are all symptoms of chemo brain, which is a documented disability. I have been to a neurologist, a psychiatrist, acupuncture, and a nutritionist. I exercise daily and I eat well (well, except for the Girl Scout cookies – thank God cookie season is over).

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Yesterday I stood in an airport parking lot, unable to figure out how to get to my car. It was on the other side of a fence, a half level above me. I could *see* it, but couldn’t figure out how to get to it. Finally I decided I should take the elevator up another floor and walk down. On my way to the elevator, I saw that all I needed to do was turn the corner to get to my car, which would likely have been obvious to pretty much anyone else. . . These sorts of lapses might seem like the “brain farts” we all have, but when they happen all the time, they are straight-up disabling. Imagine trying to do something and forgetting what you’re doing mid-task, repeatedly. . . One of the most frustrating parts is knowing that whatever is confusing you is probably totally obvious, but you just can’t seem to figure it out. This “chemo brain” is one of the many issues cancer survivors have post-treatment, and are basically left to figure out on their own. . . There is no framework for cancer survivorship. We know the framework for treatment in most cases, but the emotional, mental, and spiritual side of cancer is often ignored. . . I realized recently that I need to do some work on this, and I need to force my healthcare providers to do some work too. They keep treating the symptoms instead of the cause – going as far as suggesting two types of anti-anxiety medications and a stimulant, all at the same time (and on top of the insane number of pills with side effects I’m already on). This is like putting a bandaid on a bullet hole. . . I’ve decided to make my own framework. The book @radicalremission has nine things to change about your life to survive cancer – and because I’ve got nowhere else to start, I’m starting here. . . #cancer #chemo #chemobrain #breastcancer #youngsurvivalcoalition #breastcancerawareness

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The truth is, the system is broken when it comes to “survivorship.” When you’re done with active treatment, they give you a couple of weeks to get over your exhaustion (ha!), then send you straight back to the workforce. And the truth is, it’s too soon. Our brains are never given an opportunity to heal. We spend a year pumping people full of drugs, surgically taking apart their bodies, flipping their lives upside-down, and then send them back to their former lives, saying, “good luck out there. You need money and you need to work to get it.”

The past month has marked a shift in the way I think about myself and my cancer experience. First off, it’s okay to not be okay. And secondly, it’s okay to take some time to slow down and figure out what you need to do next.

During the first weekend in March, I went on a retreat where I felt introspective, stuck, and a bit depressed. I was fed up with how I was feeling physically and mentally, and frustrated with my constant exhaustion and confusion. Luckily, I was in the right place: essentially a cocoon of safety, guarded over by four mama hens. I desperately needed to recharge and figure out how to care for myself. The retreat was called Mending Under the Moon, and that’s exactly what it felt like.

Then the next weekend (because apparently I’m a cancer party animal), I flew to Texas alone for the Young Survival Coalition Summit, and returned with over a hundred new friends — and a fire in my belly. I signed up for a 200 mile bike ride in October with my new breast friend (ha ha), Tara. (Side note: cancer didn’t kill me and I’m hoping this ride doesn’t, either.)

Being in a room with over 700 women who’ve been through your exact same trauma is pretty incredible. The entire conference was focused on “the collateral damage of cancer,” including (but not limited to) trouble with memory, concentration, and confusion; fatigue; financial strain; anxiety, depression, and PTSD; neuropathy (tingling or numbness in your extremities); sexual problems; lymphedema (swelling of extremities due to having lymph nodes removed). I don’t have all of these issues, but I have quite a few, and learning that I wasn’t alone was incredibly validating.

I realized that I’ve spent the last six months under a rock, trying to wrap my head around what’s happened to me, and what I really needed was help. I needed a community that understood what I’ve been through, and to take advantage of the resources that are out there for me.

I am done trying to manage my life until I can’t do it anymore.  When I returned from Austin, I started calling all of my doctors. “I need help,” I said. “I have cognitive problems and I need someone to help me figure out what’s wrong.” The oncologist told me to talk to the psychiatrist. The psychiatrist said she would help me, but that she wanted me to try two types of anti-anxiety meds and a stimulant at the same time. The neurologist told me to talk to my primary care doctor, who told me to talk to my oncologist. Finally, I saw my breast surgeon for my semi-annual checkup (still no cancer, yay!), and her reaction was exactly what I was looking for. “This is not okay,” she said. “I will figure out how to help you.”

And she did. I ended up with a new oncologist and time off work to figure out how to improve my issues. We are starting by taking a “drug holiday” (weirdest term ever – this is a pretty crap vacay, if you ask me!) from the intense drugs I’m on to prevent reoccurrence, which have severe side effects.

The relief I feel is downright incredible. My issues aren’t solved at all — it takes awhile for the meds to wear off — but I’m really hopeful that getting these out of my system and starting on something different is a step in the right direction.

And in the meantime, I’m keeping my eyes out for my fifth anemone!

 

Leaving the Cult of The Busy

For most of my life, I have been a very busy person.

Even when I took a year “off” from my doctoral degree at 22, I was constantly on the move. At the time, a friend of mine commented, “You are the busiest unemployed person I’ve ever met.”

In this country (and really, around the world), busyness is almost like a cult. Everyone worships The Busy as if it’s somehow going to save us. We keep adding hobbies, activities, jobs, and commitments to our To Do lists, and we’re constantly rushing around trying to juggle it all. We are work-a-holics at work and in our personal lives, and we’re very proud of it.

When I was running my business, I spent a ton of time working. And like most people I know, I walked around proclaiming how busy I was; I wore “busyness” like a badge of honor.

But busyness is not a badge of honor. In my case – and in most cases, I’d venture to say – it was a sign that I was profoundly off center.

I was distracting myself with busyness because I was in denial. Had I slowed down and had the courage to look inside and listen to myself, I might have realized earlier that I was on the wrong path. But I wasn’t ready to do that yet; I think I knew that if I truly stopped and listened, I would have to change my entire life. And I simply wasn’t ready yet.

These days, though, I am not busy.

I realized quite a while ago that if I wanted a life of meaning (which I do), I needed to stop being so dang busy. And no one was going to stop the busyness but me. Essentially, I needed to SIT DOWN and SHUT MY MIND UP. I needed to do nothing.

There are two types of “doing nothing.”  First, there’s putting an end to the physical overscheduling: Rushing from one thing to another, adding and completing nonessential items on a never-ending To Do list…that sort of thing. Then, there’s the mental overstimulation that keeps you from living in the present moment. Multitasking, analyzing problems, scrolling through social media…these things make for a busy mind.

I don’t feel centered all the time, but I’m light years ahead of where I was a year ago. For me, being centered is about listening to myself, and knowing deep inside that I’m on the right path. It also means that, as much as possible, I try to take that tight feeling in my chest as a sign that I need to sit down and do nothing. And I accept that doing nothing for a while is both okay and totally necessary.

A big life lesson for me was this: Anxiety is not the universe telling you to do more. It’s telling you to STOP.

anxiety-is-a-sign-you-need-to-stop

I used to be terrified of my inner voice, so I refused to stop and listen to it. Changing my whole world was a Big Deal and parts of it really sucked, so I suppose I did have a reason to be afraid. But you know what? My life is so much better now. I am a genuinely happy person.

It was 100% worth it.

Thankfully, I am no longer afraid of my inner voice – though I admit I am still learning to hear and trust it. Sometimes it’s hard to tell what it’s saying, and at times I still get Intuition confused with my old frenemy, Anxiety.

Then there are the times that I flat-out don’t like what it has to say, because listening to it would mean leaving my Comfort Zone yet again. And holy crap, living outside the Comfort Zone can be exhausting. After awhile, though, I remember that it’s worth pushing through the fear of leaving the Comfort Zone.

Last week, I found myself uselessly busy. My house was really clean, the dishes were always done (that never happens)…I’d even organized and returned our library books before the due dates. I felt a small amount of satisfaction when I looked at my spotless shower, but emotionally I felt out-of-whack.

So I stopped and tried to figure out why I felt messy inside. And I figured it out – but knowing why didn’t help, so I found myself obsessing about how to fix it. Which clearly wasn’t helping. So I stopped doing that, too: I sat down and did nothing. And then, interestingly enough, I felt much better. What a nice reminder.

When you’re too busy, you’re exhausted. You’re spinning around in circles, without any real direction. Being un-busy doesn’t mean I’m lazy. It means that I am purposefully taking time for myself, so that I can have the energy to propel myself in the right direction…and not waste time on the wrong path. It’s a big lesson I learned…and one that I will happily wear as a badge of honor.

What about you? Do you belong to the Cult of the Busy? Do you take quiet time for yourself by practicing yoga, meditation, or something else? I’d love to hear!

Why I quit Facebook and only looked back a couple of times

Right after I left my married life, my friend Mandy told me to leave Facebook.

“QUIT FACEBOOK?!” I said. I knew I was addicted to it, and I knew it was unhealthy…but I didn’t know what I’d do without it. I truly didn’t. I scrolled through my newsfeed in any quiet moment. I think it kept me from thinking about the fact that my entire life was falling apart—or, during my marriage, that I was completely miserable.

I eventually did decide to quit Facebook. I was shocked to find that I actually did not miss it at all. I logged back in a couple of times, thinking “huh, maybe this isn’t so bad,” only to find myself feeling unhappy. For me, it wasn’t as much jealousy or sadness about my lack of a perfect life (which I know is the reason a lot of divorcees quit). It was more that I felt disconnected from people when I looked at my newsfeed. Here are all these people, living their lives, who I haven’t talked to—really talked to—in months…sometimes years. Looking at all these "friends" had me questioning who really cared about me, and who I really cared about.

When a friend of mine was diagnosed with cancer, I thought even more about Facebook’s worth. She and I are going through really hard times in our lives right now, and really hard times have a way of showing you who (and what) is really important to you.

If you had cancer, who would you want to know? Or, better yet, who do you actually think would reach out and call you? It’s easy to leave a comment that says “OMG I am so sorry,” but it requires an actual friend to pick up the phone and call you. And beyond calling you, who is going to bring you a casserole? To me, quitting Facebook made it easy to see who my “comment” friends were and who my “casserole” friends were. And at the end of it all, I realized I have zero need for “comment” friends anymore. I feel much more fulfilled with a handful of casserole friends than 500 commenters. In fact, my life feels much more sane without that peanut gallery of 500 commenters, period. It’s not that Facebook doesn’t add anything to my life—it actually feels like it subtracts.

A few months ago, I sat and watched my daughter play in front of a group of people who were taking photos and videos with their phones. It was like she was on television. The whole purpose of it was to show what an awesome time they were having with their lives, with this adorable girl—but they weren’t actually interacting with her. And what must it feel like to be on the other side of that? To grow up in a world where you are constantly on display?

C is still too young to be “connecting” with her friends this way, but kids who are in their 20s now are used to connecting with people artificially. There’s a whole generation of children growing up connecting with people via various media outlets, but not actually able to live their lives.

I feel very strongly that Facebook does not connect people. That social media, in general, does not connect people. I think it gives people a false sense of friendship and creates laziness in relationships. Why bother actually connecting with a human being if you already know what is going on in their lives?

What do you think, dear friends? Could you ever see yourself “quitting” Facebook? Do you think it’s helping you connect with people, or hurting your real friendships?