Help Me Help You

July 23, 2010 at 3:57 PM (Family, friends, Help, Karma, Treatment) (, , , , , , , , , )

Over the past couple of days I’ve answered a few cancer babes’ questions about their support teams. These ladies have been relatively new patients, and while dealing with their own fears and worries about their new diagnoses, they are feeling the changes in their relationships with their spouses, significant others, or family members. Reactions have ranged from anger, to cool distance, to hovering, to quiet resignation. They’re all okay, for initial emotions, but the reactions surprised the patients and added another worry to their lists. I’m saddened to hear of the insecurities they’re feeling, right when they need to feel safest and most secure.

In a perfect world, when we are diagnosed with a serious illness, our loved ones would rally to our side, offering support without need for recognition, organizing teams of ride givers, casserole bakers, and garden weeders while maintaining enough distance so we could rest and recuperate without concern. They would have easy and affordable access to support groups that give them the chance to vent their own frustrations and receive advice and affirmation from others who have been down the same path. Their emotions recognized and validated, they could be the supportive, understanding, flexible caregivers their sick ones need most.

Last time I checked, this world was far from perfect (really!), and being the perfect patient or the perfect caregiver may not be possible. But with support, understanding, and strong communication, we can learn to help each other through. I’ve put together a list of tips to help open the lines of communication, and a few resources to go to for advice or help.

  1. Ask each other how you’re feeling, what you’re scared of, and what you need from each other. Some people think the best way to support a sick loved one is by remaining stoic and swallowing their own fears. It sounds so simple, but sharing what you’re thinking about with your closest allies will not only help them recognize what they are feeling but also understand that you feel the same way. Make sure to see things from their side of the illness; while you’re worried about losing your hair and not being attractive anymore, they may be thinking about losing time at work, feeling like they have no control over the illness, or betrayed by your absence. None of these feelings is “wrong” – it’s only important to identify it and talk about it.
  2. Try to include your caregiver in decisions about your treatment, to give them a sense of having a little control as well as an opportunity to ask questions of your medical team (with your permission, of course). I know it was helpful, especially in the beginning of my disease when I felt like I’d been run over by a freight train, to have a family member at appointments and treatments with me to ask or answer questions that I had forgotten or spaced on.
  3. Diversify your list of helpers. I’ve spoken before about the priceless lotsahelpinghands.com – by giving others the chance to do for you you’re also lightening the burden on your chief caregivers. They need to live their own lives in addition to caring for yours.
  4. Recognize their efforts and make sure they get a break. As a recipient of numerous SpaFinder.com gift certificates, I am a big proponent of the extravagant pampering appointment: it’s customizable; it appeals to both genders, whether your hubs needs some manscaping or just a massage; and it’s something that most people won’t buy for themselves.
  5. Spend some time with them and don’t mention your illness. It’s so easy, like always discussing the kids with your spouse even on date night, to get pigeonholed into talking about cancer. That’ll just get everyone down. See a movie. Go out for dinner. Spend an afternoon loafing around the local bookstore. You had a relationship with this person BEFORE you got sick – maintain it and it’ll be there AFTER you get well.

While you’re laid up (and there will be plenty of that), spend a little time on the internet looking at resources to help you support your caregivers. Whether they’re joiners and would love to get into an IRL support group, an online forum, or would rather just read some helpful tips to get them through, there are plenty of places to look for more information. Here are some of the best that I’ve found:

  • American Cancer Society (www.cancer.org). There’s a whole section for caregivers, with tips for getting through and a section on finding local support.
  • American Association of Marriage and Family Therapists (www.aamft.org). Marriage and family therapists not only help couples with their marriages but entire families dealing with crises, traumas, and major illnesses. I chose our therapist from the list on this site based on his experience with young children. (He hasn’t met our kids yet, but knows our family well should I croak it and they need support.) Many therapists will accept medical insurance, and many carriers cover a certain number of sessions per year as adjunct treatment to your illness.
  • Ovarian Cancer National Alliance (OCNA) has a great online support community (http://www.inspire.com/groups/ovarian-cancer-national-alliance/). For patients, family members and caregivers, it’s an amazing group of people dealing with and supporting this disease. Post a question, ask for advice, or just kvetch about how crummy you feel – all comers are welcomed and supported with open arms.
  • And, for that matter, Inspire.com has online support groups for other cancers, too. Top-notch.
  • Gilda’s Club (www.gildasclub.org) has joined forces with The Wellness Community. With Clubhouses in cities all over (although, unfortunately, not mine) and now a thriving online forum, The Living Room, support is available for everyone in the family.

My parting thought? Talk. Talk to each other, about the easy stuff and the tough stuff. Talk about how you feel, what you’re afraid of, how you’d like to be supported. Be open to hear things you might not like; be honest about what’s going through your mind. Talk like it’s the last chance you’ll get. It probably isn’t, but there’s no time like the present. Cancer has certainly taught us all that.

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The Silent Treatment

May 27, 2010 at 8:51 PM (Energy, Family, friends, Mood, Treatment) (, , , , , , , , )

It’s so unusual that I haven’t posted anything this week. It’s not as if cancer has been far from my mind – quite the opposite, as I’m sure you can understand. It’s been hard to think about anything else. And yet, I haven’t felt like there’s been a post worth sharing kicking around in my brain.

Whenever I share bad news, I sort of hole up for a while. It’s not that I don’t want to talk to anyone, but I feel so BAD having to draw everyone’s attention back to me and my ridiculously persistent illness. I’d rather talk to you about Sex and the City 2, long weekend plans, chicken recipes, oh, ANYTHING else besides my effin’ lungs. I’m not sticking my head in the sand. I certainly don’t mind talking about it, but I hate knowing that my illness is causing distress. Which it is, don’t lie to me.

I know I’m not the center of the universe. But I can hear it in people’s voices, see it in their faces when they bump into me — they’re bummed I’m sick. I hate that. Not that you’re not allowed to feel your emotions around me, but I have a “no crying” rule for a reason. And I’m not past the angry-pissed-off-frustrated part of the bad-news-reception emotional cascade, so I’m not ready to cheerlead for myself yet. I’ll get back to you.

Have a great long weekend – maybe some time in the pool will cheer me up. Gotta get my Vitamin D, ya know.

Photo courtesy Edward Feather.

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Cancerversary

May 19, 2010 at 11:34 AM (after chemo, Faith, Family, friends) (, , , , , , , , )

A lot can happen in four years. A college education. Marriage and a baby. A vast improvement in a hack tennis-player’s backhand (I hope).

A complete rearrangement of priorities, expectations, and attitudes. Oh, and internal organs.

Four years ago today I had my first surgery. Apparently, everyone but me knew it was going to be cancer. Not sure whether I was naïve or doing ostrich impressions, but there it is. The world changed.

I’d love to give you a neat list of all the things that I’ve learned since 2006. How to look for the silver lining; how to treasure each moment, to live in the present. But most days, I don’t manage to do those things, just like any other person. It’s only in hindsight that I (or anyone else) realize how fun/special/poignant each moment is, good or bad, painful or blissful, alone or together.

I have, however, discovered that inside my laissez faire, go-with-the-flow semi-slacker self lies a bit of a lioness, fiercely protecting my family from harm and loss and managing to eke out a few more years for myself in the process. Revelatory? Possibly. Hard? Definitely. I cry every week, but that’s still outweighed by the laughter. Which is actually a pretty good measure of any life, sick or well.

Here’s to four more. Thanks for listening.

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Don’t Come For The Housekeeping

May 9, 2010 at 8:15 PM (after chemo, Energy, Family, friends) (, , , , , , , , , , , , )

I love entertaining. I don’t know whether I inherited it from my mother, who also loves throwing a good party, or whether it just gives me the excuse to wear frivolous shoes in the dead of winter when I don’t have to leave my own house, but I love hosting guests. I adore planning the menu, shopping for ingredients, and cooking for an audience that’s usually more appreciative than my kids (although Mr. Wonderful adores all my food, the young’uns aren’t quite as culinarily adventurous yet).

It’s been really hard, as I’ve gotten sick/well/sick/well over the past few years, to have to pass off hosting duties to other people. I’ve been lucky enough that some of my mother’s visits have coincided with social events at my house, in which case I’ve relied, in varying degrees, on her shopping, cleaning, and cooking assistance. But for the most part, I’ve had to let numerous gathering opportunities slip by. I just didn’t have the stamina for prepping the house, kitchen, table, bar, appetizers, etc., to be guest-worthy. And I wasn’t willing to let my standards drop.

We had a big New Year’s Day Open House this year, a big drop-by-whenever food-and-drink extravaganza that strikes me as the best kind of party for the current commitment-phobic party-goer. It was amazing, with lots of friends from different walks of our lives, hordes of kids, plenty of delicious food and Champers all afternoon. But the set-up took a few days, with the cleaning and all, and clean-up (thanks in no small part to Mr. W again) a couple days afterwards. I just don’t have the endurance to throw big-time shindigs as often as I want.

This weekend, we had some friends and their kids over for dinner on Saturday night. They’re good friends, our kids are all great buddies, and I know they’re casual folks. And although I ran the vacuum before they came, and made the little ones put away their stuff (aren’t parties great for clean-up impetus?), I stopped caring about the dust bunnies under the couch, or the piles of stuff on “my” end table. I was content to serve dinner on paper plates, and the condiments (salsa, sour cream) out of their containers with spoons. I think I might have gotten over the mortal fear that I would be judged on not decanting everything into little serving bowls, and accepted the fact that not using every dish in the house is, in fact, a worthwhile excuse for wrapping the tortillas in foil.

I can either expend my somewhat limited daily ration of energy preparing a delicious meal for my friends, or I can waste it worrying that anyone will notice that, behind the closed shower door, it’s maybe been a couple of days weeks longer than White House standards probably dictate since I’ve scrubbed the tub. And that’s just ridiculous, seeing as how I have a much better time hosting a party than cleaning my porcelain.

So the next time you come for dinner/brunch/a cookout at my house, you should be honored to have been asked. It means that not only do I love you enough to want to cook for you, but I trust you and the depth of our friendship enough to realize that you don’t love me for my table-setting prowess, and you’ll be my friend with or without the cobwebs across the recessed lights. Bon appétit!

Photo courtesy bonappétit.com

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Kindred Cancer Wise-Ass Nails Advice List

April 15, 2010 at 10:43 AM (Family, friends, Help, Humor) (, , , , , , )

This is bloody hysterical. My only regret is that Glenn Rockowitz wrote it first!

How Not to Cheer Up a Cancer Patient

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Hero Worship

March 6, 2010 at 8:17 PM (Family, friends, kids, mommy guilt, Recovery) (, , , , , , , , , , , , )

I got to meet Kelly Corrigan today. You know, she wrote The Middle Place. (If you haven’t read it yet, do so. Quickly – I’ll wait. Well, maybe not.) She grew up in the same place I did, and we have a mutual friend, Lisa, who was plugging Kelly’s new book on FB yesterday and hooked me up with the reading today at a local library. The moment she walked into the room, I felt like I had met her before, or knew her from somewhere. (I’m sure I wasn’t alone.)

Kelly was diagnosed with breast cancer in 2004. She was  37, and her daughters were 2 and not-yet-4. (Sounds strangely familiar, right?) Anyway, I won’t spoil the story for those who haven’t read it, but I will tell you that when I read The Middle Place the first time, it certainly relieved me of the pressure of having to write my own cancer memoir. Sure, the tumors were in different parts of our bodies, we live on opposite coasts, and her tale takes a different course than mine, but aside from that she pretty much wrote down every thought that was running through my head that first summer of treatment. My knee-jerk impulse to careen home and curl up in my mom’s lap. My realization that the world was not nearly as forgiving a place as my life to that point had led me to believe. My constant search for the best words to use in mass emails to strike the balance between accuracy and upbeat optimism, so as not to get anyone down (and ensure plenty of replies). My awe at the way my husband stepped up to the plate to maintain some semblance of order over chaos. My fear of how every moment of my illness was affecting my kids.

Kelly read from The Middle Place and her new book, Lift, a small but laser-sharp review of her daughters’ little-girl years, which she wrote so they would remember more than Kelly had of her own early youth. She explores so many of the hidden joys and pains of parenthood, and made me want to write down more of my own boys’ moments, knowing my own terrible memory and feeling the need to share their trials and triumphs with them when they’re older.

Quick-witted and smart, the more Kelly spoke, the more I understood why her books and her essays are so well received. She said herself that she “walks a fine line” of not-having-really-bad-stuff-happen-to-her (no plane crashes, alcoholism, crushing poverty) but still speaking to everyone in common sentiments. Her humorous take keeps the mood light enough that you want to read more, but the love that is so evident in all of her stories, whether about her own daughters or just dear friends, carried all of us in the room right into her lap.

So of course I had to say hello, and our mutual friend had given me a name to drop. I told her how she had written the book that I was going to write, and she laughed graciously. I’m sure I gibbered on, unable to get across how truly aligned I had felt with her own reactions, making my career as a wordsmith seem a bit misguided. I only hope that I didn’t embarrass Lisa too much.

Maybe when I get to meet Jude Law some day I won’t sound like quite so much of a starstruck schoolgirl. Then again, he hasn’t read my mind. Yet.

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Free Happy

February 24, 2010 at 9:35 PM (Family, friends, Happy, kids, Sleep)

Okay, grouch-break! Free happy:

  • toddler giggles
  • grey rainy days in october when the woods glow with yellow maple leaves above wet, black tree trunks
  • waking up early and realizing it’s saturday and rolling over to go back to sleep
  • getting into a warm sunny car on a cool day
  • hot showers
  • full-body hugs
  • warm brownies with vanilla ice cream (okay, that’s not free but it’s accessible)
  • watching my dog play with a stick the way a cat would, tossing it and barking at it
  • sitting down to dinner with my family every night
  • using a big word like flaneur or schadenfreude accurately in a sentence
  • someone else emptying the clean dishwasher
  • the sun-sparkles on freshly fallen snow
  • my boys being old enough to play a board game for 2 hours without parental intervention
  • four words: nap on the beach
  • youtube
  • how quiet it is during a snowstorm
  • hanging with friends that really get me
  • diving in and swimming underwater from one end of the pool to the other
  • The Daily Show
  • new magazines (again, not free, but close)
  • human-free inter-species friendships:
  • seeing plants starting to push up out of the ground in my garden in the spring
  • re-reading a childhood favorite book with my kids
  • personal snail mail
  • cicadas and owls in my woods at night
  • did I mention brownies?

Have any of your own to share?

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Non-Cancer-Patients Have Feelings, Too

February 17, 2010 at 9:31 PM (Family, friends, Recovery, WTF) (, , , , , , , , , , )

Before I was The Carcinista, I was known as the Fashion Nazi. Working hard at building a style consulting business, I was the go-to gal for advice of all sorts (“I have this wedding to go to…” or “Gee, how about we go to the mall this weekend? I’m looking for boots…”) and quite popular when friends or acquaintances wondered if this outfit made them look fat/out of date/mutton-dressed-as-lamb. Clients streamlined their wardrobes and lost fifteen visual pounds/years. Fashion review columns flowed from my fingertips. Withering red-carpet reviews became my calling card.

The downside, apart from wasting countless hours lost in W and on style.com, was that in social situations, good friends and new acquaintances alike were constantly apologizing for what they were wearing. “Gee, Kate, if you’d told me Sarah was coming to the party, I would have dressed up!” I tried to explain that unless they were my clients, their appearance was their own business, and it didn’t matter to me what they wore, but I guess Clinton and Stacy’s reputations preceded me. No matter how much I reassured them, there were always sheepish mea culpas for all-black outfits, comfortable shoes, or un-made-up faces.

Now that my public persona has shifted a bit, although I’m still the sassy style arbitrix I always was (with occasional forays into the yoga-pants-and-oversized-sweater look on schlumpy days), I’m still getting bowing and scraping from people. Only this time, they’re apologizing because I have cancer. Everyone has gripes. Everyone has a lousy day, a sore muscle, a bad cold. But no one feels like they can tell me about it, because my cancer trumps any other life gripe.

Thanks, everyone, I appreciate your…what, grasp of reality? But it’s all relative. My reality is mine, and your reality is yours, and if you’re sore from shoveling snow, it’s okay to complain about it. I promise I’m not thinking, “Wow, what a selfish bitch she is, grousing about sitting in traffic; I have CANCER!” I actually got back in contact with a dear friend after a too-long hiatus, and she told me she hadn’t called in over a year because she’d been having confusing medical problems but they didn’t hold a candle to mine, and she hadn’t wanted to complain. Are you kidding me?

Look, kids, you love me, scars and all. And I love you, baggy sweatshirts and all. And I want to know what’s going on in your lives because I care about you and how you feel. So complain about the flunky at Starbucks who screwed up your chai. Cancel our playdate because you have a headache. There’s no measuring stick for a crappy day.

Just don’t tell anyone I dress you if you wear that out in public.

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