MOVING ON AFTER CANCER: MELANIE (FIRST IN A SERIES)

Many positives come out of cancer, and I admit I don't always write about them. But today I'm going to. The biggest ones involve the many new friends I've made since my December 2010 breast cancer diagnosis. I often refer to these friends as  The Rubies, and I'm fortunate to have several sets of such wonderful gems. 

Long before I was on Twitter, and about four months before I started this little blog...

MENTAL MALADIES, POST CANCER

In honor of the 2nd Annual World Mental Health Day, I'm joining the blogging party (albeit a bit late) in an effort to shed some light on emotional health following a cancer diagnosis.

I'm not a medical professional, but I'm pretty sure whatever mental maladies you struggled with pre-cancer will be exacerbated post-cancer. Your usual coping tools will no longer work. Fasten seat belts. Gonna be a bumpy ride.

NOT READY, NOT SET, GOTTA GO Pre-cancer, exercise was an effective form of mental and emotional therapy for me; it helped to reduce my overall anxiety (I have always been a worrier). Post-cancer I wanted this to be the same. But after a double mastectomy, reconstruction and subsequent healing complications, movement and lifting restrictions by my doctor meant I couldn't exercise for long stretches of time. As in, months at a time (aside from walking, big whoop there). Suddenly my exercise tool was missing from my toolbox. And as you know, being inactive and burning fewer calories leads to weight gain. (Ten pounds over here.) That means more anxiety, 'cause extra weight is a risk factor not only in getting breast cancer, but in recurrence as well.

What I didn't see coming was the lack of energy brought on by a cancer diagnosis. Dealing with having cancer is obviously very emotionally depleting. Your world is turned completely upside down, you spend more time in doctor's offices than you do with your friends, and you have to practically enroll in medical school to understand what's going on in your body. (My brother calls it getting my WebMD degree.) Tack on surgeries, treatment, Tamoxifen, and the lethargy that comes from being in bed and just laying low (my BC sistahs who had chemo and/or radiation really suffer in this department)... well, you can see how easy it is to gain weight.

Some people find that they lose their appetite during times of extreme duress. Some find their appetite increases. I have experienced both of these. When you're healing, it's vitally important to eat healthy, high-protein foods. So you have to keep eating. For anyone who has ever tried to numb a bad (or good) emotion with food, this is tricky territory. My primary care physician set me straight regarding feeling bad about my extra pounds; he looked me straight in the eye and said, "Now is not the time to be dieting." What I heard? "Go ahead, eat the ice cream."

You might be thinking Hey, I can always burn off a few extra calories in the bedroom. And that might have been true pre-cancer. But lopping off body parts chews you up and spits you out onto a very dark and harrowing road, one that takes a loooooong time to find your way back from. So if you had any Body Image Issues before cancer (and lets face it, who didn't?), you'd better grab your crash helmet, 'cause you live in B.I.I. town now —where life is always under construction.

All this post-cancer anxiety may make you want to self-medicate by adding a little wine to your whine. And who could blame you? But you know pain killers and drinking make a bad marriage. You might also be tempted to keep up the pain pills even though you're not really in that much pain today. (Again, who could blame you?) But please be careful on these slippery slopes. Restrict that bad-girl behavior to a few hours, not a few weeks or months, please.

This leads me to getting a good night's sleep. Remember those innocent moments before you were diagnosed, when you'd be laying in the dark, waiting for sweet slumber to strike? Cancer strips you of that tender time. Cancer steals your sleep and hack-saws your dreams. Nighttime becomes terror time, just like when you were a little kid, except now the scary things are no longer just in your imagination. Knocking yourself out with pharmacology is often the only way to get a good night's sleep post cancer, I am afraid to say. I have had good results with melatonin too. (Always check with your doctor before taking any Rx aids, OTC or otherwise.)

As you can see, a cancer diagnosis has very little positive effect on your mental and emotional health. That's why you need to be prepared.

WHAT NOBODY TELLS YOU
When you're in attack-and-recover mode, all of the above anxieties are going on all at once. And you somehow get through it — with the (hopefully) loving support of family and friends who bring you food and flowers and cards and comfort whenever they call or stop by, which is (again, hopefully) often. Their attention and distraction enable you to temporarily cope emotionally. But what happens if you don't have such a good support system? What happens when you have to struggle through a lot of this s*** alone? And what happens when the people you have come to depend on are no longer dependable because they need to get back to their own lives? What happens then? 

Ah, the frightful secret: On the heels of healing comes disappointment — in ourselves, our bodies, our minds, our friends, our family, our life. Because, let's face it, everyone wants to get back to "normal." They need to get back to normal. And eventually that is what they all do, because they have to. And you? Well, you'll never get back to "normal." You have to find your new normal. And that sucks most of all.

So you gotta figure out which new tools you need in that lovely emotional toolbox of yours.

The first crucial thing I did to counter my mental maladies was to surround myself with other women who were diagnosed with breast cancer at the same time as I was. I joined an online group at BCO and seven of us then started our own closed Facebook group. I call these wonderful women my rubies; I wrote about them here. And I couldn't have made it through all this BC crap without them. They understand everything I am going through. They lift me up in my darkest hour and cheer me on in my happiest moments. We are always there to listen to each other, 24/7. Though we live in different parts of the country, I was fortunate enough to meet two of my rubies this year, and hope to meet the rest of these wonderful women in 2013.

The second crucial thing I did for my emotional health was to start this blog. In the beginning I was writing to no one, for no one. Because no one knew I had started this thing. Very few people who knew me in "real" life knew I was blogging about life post-cancer. I didn't tell them because I needed to feel free to write about whatever was troubling me without worrying that someone might be offended. Of course, that still happened anyway. (One of my closest friends told another close friend, Be careful what you tell her, or she'll blog about you!) Oh well. The point of this blog was never to please anyone other than me. Call it selfish; call it self-preservation. I needed to get my thoughts and fears and experiences out of my head; it was literally the only way I could make sense out of what I was going through. Writing it out somehow brought me great clarity.

What I didn't expect was to find a rich, wonderfully supportive breast cancer blogging community out here in cyber city. Oh my! Besides finding my rubies, this has been my greatest post-cancer joy. While I have yet to meet any of my "bloggy" friends in person, I feel a great kinship to a great many of them. Just take a look under my "Favorites" heading to find some really inspiring ladies, and even a few men. They work through their mental maladies daily. I'm willing to bet they can help you too.

I still haven't told the majority of people in my "real" life about this blog. And of the ones I have told, very few read it. (Guess you have to have gone through cancer in order to truly relate to it.) So while I don't even know who is reading this, I know that you live in 87 countries around the world and counting. And that completely blows my mind.

Blogging has become a positively essential outlet for my emotional health. I'm hoping it helps you in some way, too. Isn't that what community is all about?

HONORING MARY

Another bright light has been extinguished by breast cancer.

MARY (aka MBJ on BCO) has died.

Doctors gave her four months. She was gone in six weeks. Her passing has left the online breast cancer community at a loss for words.

Cancer is some scary sh*t.

I feel a need to honor this lovely woman who was so generous in spirit and insight; who always had a kind word to spare no matter where you found yourself on the breast cancer path; who so readily shared her own pain in the hopes that it might help others. And she helped so many others.

Mary was just two years out from her initial breast cancer diagnosis when she developed constant shoulder and arm pain. Several doctors told her she had a frozen shoulder; another said she had nerve damage. Mary herself suspected that maybe she tore a muscle or ligament. She received cortisone shots and some physical therapy, but the pain never went away.

Mary was also uninsured. She waited months for an MRI appointment (which, ironically, is tomorrow). When she was finally (correctly) diagnosed in early February (yes, just last month), doctors sent her home with hospice. She died six weeks later. She never had a chance.

But you do.

If there is a lesson in this loss (and dare I say this may well be Mary's legacy), it is this: If you have nagging pain, get it checked out. Now. Doesn't matter if you have cancer or are just afraid you might. Our bodies are very wise. They talk to us all the time; but we don't always listen. And even when we do, sometimes the medical profession doesn't. Sometimes, they get it all wrong. Like they did with Mary.

How can we honor her life? By listening to our bodies, speaking out on behalf of our discomfort, and not taking no (or "I don't know") for an answer.

And listen to your gut. If what you are hearing from a health care professional doesn't sit well with you, keep shopping — until you hear something that does.

R.I.P. Mary. (To hear her lovely singing voice, visit the website her husband created for her here.)

THE RUBIES

In the spirit of a new year (and inspired by my blogging pal Marie's thought-provoking queries), I want to open 2012 with a question. Anyone reading this post has either been diagnosed with cancer or knows someone who has. It doesn't matter if you are in the former or the latter group; our collective world is shattered and splintered by The Big C.

But among the fallout and the rubble of cancer come The Rubies — the people who keep us grounded, or safe, or sane, or distracted, or engaged during all the rolling ruckus.

The Rubies are there at the right time, in the right place, and we have the foresight to recognize them as the rare gems they truly are.

As a person dodging the minefield of cancer, I am fortunate to have many Rubies. And without the internet I would never have "met" the majority of them. I count among my Rubies the courageous cancer bloggers who are telling their tale with honesty and humor and bravado. They paint a deeper, fuller, more complex and truthful picture of cancer in all its crazy colors — and we all can benefit from their wisdom. I feel stronger and less alone in my struggles because of them. And so I say thank you to the women and men of the blogosphere.

I also am lucky to have Rubies in the form of a group of women I met online at BCO. We are seven in total, and range in age from 27 to 53. We all were diagnosed with breast cancer at the end of 2010. Five out of seven of us had bilateral mastectomies; one had a single mastectomy; one had a lumpectomy. Three had chemotherapy; five are on Tamoxifen. No one lives near the other (though some ladies did manage to meet in 2011) and I have yet to meet these fair maidens myself, but we "talk" every day. They are my lifeline, my sanity, and my strength. And so to my six Rubies, I say thank you for always being there. I couldn't do this journey without you.

But getting back to you, dear reader: Who was/is your Ruby when you were dealing with The Big C in your life?

FINDING SUPPORT

On December 20th, 2010, I sit down at the computer and begin my real journey: The one where I take off my goggles, put on my glasses and start Googling. (This is otherwise known as the "information-hunting-and-gathering" phase of life after a breast cancer diagnosis.)

The process of medical fact finding forever alters — in fact, downright bursts — the protective bubble we build around ourselves upon initially hearing the C word in the same sentence as our own name. But let me warn you: You better be ready. Because once you open the door to that world of info, the winds of change WILL come rushing in. And after that happens, the hands of time can never be turned back.

My fact-finding mission on this day shortly before the Christmas holidays uncovers a support group that I never knew existed. A community comprised of women of all ages and stages that congregates online to share their battles with breast cancer. It's a safe haven of sorts, a place where we can dump the most gruesome details of our cancer battle and find not only relief, but others who have been there, done that. It's a 24/7 sanctuary free from judgement, full of support and rampant with humor. Mothers representing daughters fighting the disease can be found here, as can daughters gathering strength for their moms. Even husbands have been known to join forces on behalf of their wives. Everyone is welcomed; you just need an introduction to The Big C.

There is safety in numbers, and that certainly is the case with the women fighting alongside me — they number in the tens of thousands on this group alone. We stand together, tall in our struggles, our hopes, our fears. We are united in our desire for a long life, a cancer-free future, and unlimited fun time with family and friends.

And I don't know how I could have gotten through it all without them. (See Ditching Control  and Curtain of Dead for more of my story.)