Breast cancer and Hurricane Irene have something in common: Families must cope with the fear and uncertainty of the approaching storm as well as the aftermath of the physical and emotional devastation. Hurricanes and breast cancer are life-changing times when families need to pull together for the long haul. They are times which call for selflessness and support, but unfortunately, not every family member responds well to a crisis or has the same needs.
Sadly, many breast cancer marriages split up because husbands don’t know how, or don’t want to be caregivers or, as one husband told me, he didn’t want to be “holding the bag if she died.” What he didn’t realize was that when he took the cowardly way out, he was the one who caused a death, the death of his family.<PREVIEWEND> A study in the journal Cancer reports that in families where one spouse is seriously ill, men are more likely to be the one who abandons their spouse. Soon after their diagnosis of cancer or MS, 21 percent of women became separated or divorced, while only 3 percent of men with a life-threatening illness experienced divorce. Marriages aren’t the only relationships to suffer during a crisis. As unthinkable as it sounds, children of every age are often left to find their own way. I was one of those kids.
Only one of my teachers, Mrs. Jeeter, even talked to me about my father’s death from cancer. At the time, I didn’t have the words to tell her how much I appreciated her compassion. She was the only person, in or out of my family, who acknowledged my pain. She asked me if she could tell the class why I’d been absent, and I agreed. This was back in the day, when the big “C” was only talked about in whispers, and families hid their dirty linen behind the public pretext of being a “Leave it to Beaver” family. While my teacher meant well, my classmates reacted to the news like I was someone who’d been exposed to something contagious like “cooties.” The only kid in my school who said anything to me was Gordon Downey, who appeared on my 13-year-old doorstep the next day with a condom in his hand. Because his father had recently died of a heart attack, I guess this was his pubescent way of comforting one another. Not!! My experience taught me how much kids need words of comfort, not just from adults, but from their peers.
As many of you know, at the beginning of the summer, Amy, who wrote BreastCancerSisterhood’s AMY’S BLOG, big sister to other kids and teens whose parents have cancer, decided to pass her blogging torch on to someone else. After two years, 111 blogs and a semester in Europe, Amy decided to focus on her Senior year in college. She and her mother Kathy, a breast cancer survivor, opened their hearts and shared their stories about Kathy’s breast cancer and how they moved forward as a splintered family. When I saw them at James’ memorial service, I can’t tell you how supported and loved they made me feel. They’ve become part of my family, and I love them both. While I understood it was time for Amy to move on, I knew she would be a hard act to follow. After much searching, I’ve found another special young woman I want to introduce you to... Alexandra.
Alexandra is 17, a senior in high school who loves to write Science Fiction and Fantasy and is taking creative writing in school. Like Amy, her mother’s breast cancer has made her wise beyond her years. Alexandra was 10 when her mother was diagnosed with breast cancer. In addition, her mom was pregnant. Their family has experienced breast cancer’s storms and have weathered them, together, and are stronger than ever.
Alexandra and I are so exited she is joining me. I hope you will pass ALEX'S BLOG or our Newsletter along to other cancer families. Her youthful voice may be the only one out there who speaks to children and other teens who need to read her words and know they aren’t alone.
Just when I think I've gotten over the hump, something happens, or a series of some things happen to remind me James is not here. He's not coming back. Today I went to our storage units in search of things to put on my office wall, art we've collected and photographs I've taken of far away places. While I found the things I was looking for, I also found things I wasn't ready to see.
One of the storage units contained mostly boxes. It didn't matter what they were labeled, "Brenda's Office," "Fragile" or "Family Room," these stacks of uniform cardboard boxes held the contents of my life, a life spent with James. Would you believe I've saved every rose James ever gave me? I have boxes and boxes, big cardboard boxes of dried roses; dried when they were perfectly formed, beautiful buds still bound together, petal upon petal, like lovers' hands intertwined finger by finger.<PREVIEWEND>
James gave me roses for birthdays, anniversaries and for no other reason than because he loved me. I would always lay them out on newspaper on top of the refrigerator to dry. It seemed as though there were always roses there, some taking a month or more before they were perfectly dried. Afterward I put them in old wooden boxes, silver trays and crystal bowls. They filled the living room, the dining room, and my dressing room, even an old Lalique bowl in a nook beside the tub.
Today I didn't open the cardboard boxes of “Roses” because I feared they would be too hard for me to see, too hard to think about the candlelight dinner on the floor with the vase of roses beside us and yet, I would have been better off opening the roses because I already knew what was in them. I would have been prepared. It was the boxes marked "Fragile" that disarmed me, that made my heart beat out of rhythm and brought me to my knees. Unlike the "Roses," the contents of “Fragile” were unexpected. How could I have known the fragile things contained parts of my heart, our life and our love? They were full of James in the most unexpected ways: the inlaid box he bought me in Italy and surprised me with when we got home, framed photographs of ski trips with family and friends. I even found the place cards from the dinner after our wedding; a card with “James” and another with “Brenda” were written in black ink and an elegant script.
This week my online friend and fellow breast cancer survivor, Elaine Olsen, atPeace for the Journey, wrote about the various ways we can use our creativity to "solve the problem of pain." Her words made me think about the pain I’ve experienced since James died, the pain and sweet memories brought to life by the simple act of opening a box. Each of us have experienced pain after a cancer diagnosis or other serious health problem; the pain we feel when we lose part of ourselves to death, divorce or job loss. Pain is universal. While we express it in different degrees of fear, hopelessness and anger, how do we solve the problem of our pain?
Do you remember how you felt before your most painful moments? Can you remember your life before them, and have you contrasted them with your life since then? Have you thought about putting your feelings down in a journal? It doesn’t have to be a journal or a blog you share. It can be a healing tool for your eyes only. Maybe it contains words and photographs you can call on again and again. Today I’ve put my feelings down in my blog because it helps me make sense of the myriad of emotions I’m feeling because of half-opened cardboard boxes, glimpses of the life I had and the one I’ve yet to figure out. I hope my words resonate with each of you in positive ways you didn’t imagine. What can you do, or what have you done to heal your pain? What steps are you taking to make your mind and body stronger? What can you do to help someone else who’s embarked on a similar journey?
Here a box, there a box, everywhere a box-box. James will always be in all of them. I know he’d want me to make today a good day, to do everything intentionally, with love and compassion and reverence for God. I want that for you as well, sweet friends.
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Every Monday night at 9pm EST there's a terrific chat on Twitter about “the intersection of breast cancer and all things social media” (#BCSM). If you've never used Twitter, it limits users to 140 characters, including blank spaces, which forces you to make your thoughts concise and to the point. Perhaps the best thing about Twitter is that it allows you to have dialogs with people from all over the world, people you wouldn’t ordinarily meet.
For those of you who wonder if anything meaningful can come from writing a sentence or two, here’s a sampling of last Monday night’s Twitter chat about “finding our new normal after breast cancer treatment.” Participants in this conversation are listed below.<PREVIEWEND>
•Don't get frustrated - pace of recovery often much slower than you would like/expect.
•Still learning patience/faith but it’s all about letting the body/mind spirit heal @own pace.
•No such thing as normal…ever again. Still can enjoy life, tho.
•I happen to hate the word “normal.” •Very hard to accept that things might never get back to “normal.”
•Patience is a good thing! Be patient as you adjust to post-treatment life.
•Getting back to relationships…sometimes it felt like I saw the world in color & everyone around me in b&w. •You changed but no one else did-big problem with relationships after treatment.
•I savor life fully but am deeply traumatized by BRCA. 2 sides of coin.
•Did anyone else seem to bottom out AFTER treatments were over? Had to push… and then BAM!
•Very common to bottom out, so much energy put into just making it thru treatment, then over! You crash.
•For all of us, some days are better than others. For those who’re surviving something, those bad days play out in stereo. •Our co-survivors probably want us to find our new normals more than anyone because they’re SO ready for life to move on.
•Treatment ages you, no one expects that. We’re all getting older but treatment seems to accelerate the process. •Knowledge is power but also a burden sometimes.
•How can we help others see “new normal” as a chance for discovery? By sharing our stories.
•Some days I feel like I’m 90. •Perhaps we could suggest to them that “new normal” is a chance to have a “do over.”
•Embrace the things you’ve put off or feared.
•I might be a little impatient and hard on myself. •Help others understand that finding their new normal is an opportunity full of new insight others don’t have.
•The opportunity to have a new normal sure beats the alternative. •Healing physically is only part of the process, emotionally can take much longer.
•Relationships do change and that can be a sad and frustrating consequence.
•Lots of husbands stray after breast cancer, perhaps because they’re SO ready to move on & their wife isn’t there yet. •Fatigue huge problem. You look fine, people don’t understand why you can’t do what you used to, causes strain.
•Parents in major denial and didn’t wanna talk cancer.
•25% of husbands leave their wives after breast cancer. Most are thinking w/their little brains & some are just jerks. •Disease is a psychological burden on the whole family.
•The “new normal” is a phrase I see over and over again… and never liked!
•Normal is what you think you are and no one else is.
•Cancer seems to bring out the best and the worst in us. Fear is natural but can be damaging. •Why do I want to return to ‘normal?’ I had cancer when I was ‘normal.’
•The only thing standard about recovery is that it’s a process we each live through differently.
•It also assumes that treatment is over then & it’s all behind us, which it never is. •When you’re done with treatment, it may not be done with you.
As you can see, there’s a lot of wisdom and experience in our Monday night Twitter chat. Since many people don’t care for the term “new normal,” toward the end of the hour, moderator, Alicia Stales, tossed out two new questions: “So what’s a better phrase besides ‘new normal?’ & How do you describe this different person that you are?” to which @fiestybluegecko from Thailand responded, “I see life through a different lens now.” I thought about Alicia’s question regarding a better phrase for ‘new normal’ and answered, “After treatment we look at things differently and we “gain” our “new perspective.”
Anyone who says Twitter is for “twits” or that you can’t have meaningful conversations in 140 characters or less is mistaken. I don’t know about you, but some of these responses are not only profound but good suggestions for those who are going through cancer or are in the process of “gaining” their “new perspective.”
PS: Some of the participants in our Twitter chat:
@Bethlgainer, Beth L. Gainer
@BCSisterhood, Brenda Coffee
@DrAttai, Dr. Deanna Attai
@drseisenberg, Dr. Steven Eisenberg
@feistybluegecko, Philippa Ramsden
@itsthebunk, Liza Bernstein
@JediPD, PDara MD, FACP
@jodyms, Jody Schoger, co-moderator
@nursefriendly, Andrew Lopez, RN
@regrounding, Lori Marx-Rubiner
@rsm2800 Robert S. Miller, MD
@stales, Alicia C. Staley, co-moderator
@subatomicdoc, Matthew Katz
@westr, Robert West
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My girlfriends and I are talking about taking a trip to Paris next year, and we’re interested in staying in a “vacation rental by owner” as opposed to a hotel. I’ve found numerous websites that list Paris rentals by arrondissements, or neighborhoods, provide photographs and prices of fully furnished apartments and dates they’re available. Each arrondissement has it’s own distinct charm. For instance, the 8th Arrondissement reflects the quintessential glamour and elegance that is Paris. Cartier, Louis Vuitton, the Champs-Elysées and the Arc de Triumph all share the same streets as chi-chi apartments with high ceilings, windows swathed in pale blue silk, parquet floors and furniture worthy of Marie Antoinette. The 5th and 6th Arrondissements on the Left Bank, or Rive Gauche, is home to the universities of the Sorbonne and the more bohemian and intellectual parts of the city. Perhaps it’s the window peeper in me, but I like the idea of staying in someone else’s home, stepping into their shoes, if you will. It gives me the opportunity to abandon my life for a short time and try part of a stranger’s life on for size. While thinking about a trip to Paris, it occurred to me that at some point after finishing breast cancer treatment, it might be helpful if we all stepped into someone else’s shoes for a time.<PREVIEWEND>
Like little kids who know the number of days until Christmas or summer vacation, most of us count down the days until we’re finished with chemo and radiation. Even though we’re happy to have treatment behind us, it’s not uncommon to find it scary to be “on our own.” During treatment we had super fighters like chemo and radiation, while frequent doctors’ appointments kept a close eye on the rise and fall of cancer antigens and the state of our immune system. Even though we had no hair and no energy, both were tangible symbols that something was hard at work, killing our cancer. Soon after we’re finished with treatment, however, our hair grows back and we’re “on our own,” and it’s easy to let our fears take over.
It’s at that point that family and friends may question why we’re not embracing our life again, ecstatic to be free of doctors’ appointments and nausea. “Why aren’t you doing the happy dance?” they ask, perplexed by our insidious and seemingly illogical fears that our cancer will return. “You finished treatment a year ago… or you finished treatment five years ago… Move on already. Why can’t you just let it go?” Because our co-survivors have also looked forward to life returning to “normal,” they don’t always understand why we can’t leave cancer behind as easily as they can. While we know why we can’t, it’s often difficult to make others understand, plus sometimes, “stuff” happens along the way that makes it even harder.
I remember being at my first post treatment yoga class. Without warning, in the middle of a Sun Salutation pose, I dropped to the floor like a rock. I felt like I’d been flung from a Tilt-a-Whirl. The room was spinning, and I couldn’t orient myself or find a way to sit-up. Immediately I thought I’d overdone things; perhaps I should’ve waited another week, or maybe “it” had already metastasized to my brain. “It” turned out to be a persistent case of positional vertigo. You would have thought I would have been thrilled it wasn’t a brain tumor and that I would soon return “to normal,” but on some level, the vertigo made me feel even more vulnerable. For a short time, it took away my self-confidence about being able to successfully move forward after treatment. If in a blink, a microscopic piece of something in my inner ear could turn my world on its axis, what would cancer do if it returned that quickly and profoundly?
Whether it’s cancer, vertigo, death or divorce, all of us occasionally find ourselves in need of something to get us back on tract and help us focus on something or someone other than ourselves. If you’ve ever watched The Dog Whisperer on TV, Cesar Millan frequently rehabilitates dogs by jerking their chain. When he wants a dog to stop one kind of behavior and adopt another, he jerks the chain around their neck, forcing them out of their negative behavior. People are like that as well. If you’re having trouble getting your footing after something devastating and life-changing, perhaps you need a bridge to help you get you from the slump you’re in to your new normal.
I’m gradually finding my way without James, and without a family, but I won’t lie to you: It’s been hard, but I’m making progress. From time to time, we all need something like “vacation rental by owner” where we adopt someone else’s lifestyle, volunteer to help abused and abandoned children, take an art class or learn another language. Like Cesar Millan, we need to jerk our chains and jumpstart our brains to snap us out of our funk and keep us from worrying that we’re all on our own.
While my girlfriends and I can’t afford to step into most of the luxurious lifestyles in the 8th Arrondisement, we can stroll up and down the avenues, sip champagne and strive to find a little of the nonchalant chic French women seem to be born with. Personally, I think the mystery about French women has more to do with their bien dans ta peau, being comfortable in their own skin. Regardless of whether we ever try and step into a French woman’s shoes, we should try and adopt their passion for life. We shall only pass this way but once, so let’s make the most of it.
PS: About vertigo: Fortunately my doctor gave me a series of exercises designed to reposition the microscopic crystal in my inner ear that had become dislodged. By the way, you can find these exercises on the Internet. I did the exercises at least twice a day, over a period of a week or so, and my vertigo stopped. While it’s come back several times since then, consistently doing the exercises makes it go away.