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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Cynics Don’t Do Laughter Yoga

April 12, 2010 at 7:39 PM (Energy, Mood, WTF) (, , , , , , , , )

Went to a great conference at The Cancer Factory on Saturday, for survivors and patients under 40. The vibe was good, the kids were hip, and the morning session I went to, on Mindfulness, was fabulous. Bagged lunch eaten and new friends made, we shuffled back into the main meeting room for the first session of the afternoon. Laughter Yoga. Now, I’m all about laughter, as you can probably guess from various posts herein, but I’m afraid I’m better at laughing at people than laughing with them.

Our enthusiastic moderator started us off with a quick description of the restorative and oxygenating power of laughter, and the history of Laughter Yoga, which started at a clinic in India and has now spread to Laughter Clubs all over the world. (Look for one in a neighborhood near you!) Apparently, even fake laughter can raise your mood and improve your breathing and outlook on the day. And lord knows I tried. But she had us getting up and walking around the big open chair-circle (never my first choice) and running up to each other, pretending to shake hands with an electric clown-buzzer while making eye contact, and laughing uproariously. Sort of fake-it-’til-you-make-it laughter.

I’ll admit it was sort of goofy at first, and the bizarreness of it all got me to laugh a few times. She let it go for three or four minutes, then we returned to our chairs for a breathing exercise and wind-down. Aaaaaaaand then she explained the next mock-hilarious encounter for us to enact in random pairs. And on it went. The second exercise I definitely wasn’t trying as hard. By the third, I was out. Sat in my chair and felt the eighth-grade-wow-this-is-so-lame vibe creeping up over the back of my neck.

I was a leeeetle bit jealous of the folks (a smaller and smaller selection of the whole for each subsequent farce) who were still participating, as their personal insecurities/strange-o-meters were low enough that they could whoop it up. But the longer I sat there watching, the less I felt like laughing, and the more I felt like leaving. I was comforted by the sight that I was not alone in my unease.

Am I immature? Or was it just naptime and I had run out of cancer-fighting pep for the day? Probably both. All I can tell you is that I could practically feel my blood pressure inching upward, until the leader finally congratulated us all on our spectacular job and we closed our eyes for a few more deep breaths.

It certainly wouldn’t be a club I’d run out to join to help me relieve stress. Color me snide.

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Health-Care Legislation: Good For Us?

March 22, 2010 at 12:01 PM (Uncategorized) (, , , , , , , , , )

I’m not a political junkie. I feel like the current slate of crap I have to worry about (chemo, dinner, second-grade projects, emptying pockets before laundering, my backhand, spring fashion forecasts) is full and engrossing enough that I really don’t need anything else in my brain. But I have kept an ear to the ground over the health-care debate, and I am very glad it’s over.

Except it’s not. (And let me just preface the following by saying that although I’m not an ignoramus, I do NOT have all the details of the plan neatly laid out in a flow-chart in front of me.) What I’m seeing is like a little plaintiff winning a big lawsuit against a major corporation: yes, the gavel went down, but the money is soooooo far away. States are filing suit; Republicans are heralding the end of civilization as we know it; Democrats are patting themselves on the back; retirees are sharpening their voting pencils; patients who need treatment NOW are still four years from a doctor’s appointment. Will more uninsured Americans get health-care coverage? Probably. Will the overall balance of people-getting-what-they-need-at-reasonable-prices swing into the positive? No one knows.

I love that insurance companies don’t get free rein to cancel coverage or raise rates the way they used to. But upon whose shoulders will they lay the cost of adding all the people they denied in the past? I’m guessing we, the payers. I have been quietly grateful for my outstanding insurance coverage over the past four years, and the fact that we’ve been able to see the doctors we want and get the treatments I’ve needed with only a couple of surmountable hiccups. Now I’m more than a little curious how that will change.

For those of you who had nothing, and need health care desperately, I share your excitement. I know that access to care is a huge problem for young cancer patients, and it’s beyond not-fair. I agree that some reform was sorely needed and I’m so glad we got some. I’m just  going to hold back on my ticker tape scattering until more of the facts are in.

Are you celebrating today?

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Get Up Offa That Thing: Exercise Helps Cancer Patients

March 16, 2010 at 4:18 PM (Energy, Happy, Recovery) (, , , , , , , )

Don’t hate me because I’m in good shape.

When I was younger, I was a sloth. My mom signed me up for gymnastics classes, diving classes, riding lessons, the local swim team. I didn’t last long in any of them. The problem was, they all involved exercise and effort. I was much more of a sit-down-and-read-a-book kind of girl. Because sports were mandatory at my school, I volunteered to be the goalie for both field hockey and lacrosse, if the coach would let me get out of running laps with the rest of the team. (Hey, if I could stand in one place for the whole game, why did I have to get in shape?) I was even voted “Class Couch Potato” in my senior yearbook.

Then, when I was 21, I met this guy. He never sat still. Rollerblading, cycling, running, hiking, sightseeing… if I wanted to spend time with him, I had to get up. But still it took an engagement ring before I really got serious about working out. (Holy crap, a wedding gown? I better get my rear in gear.)

Fast-forward to the birth of my first son. All of a sudden, working out became a treat (sort of), a ninety-minute period of alone time when I was responsible for no one but myself. And, as any mother, stay-at-home or otherwise, can tell you, we don’t even get that in the loo. If I had to exercise for some peace by myself, I’d do it. (Never mind that it had to be at 5:30 a.m.; that just gave me the excuse to nap when the baby napped.) It turns out I am vainer than I am lazy.

Fast-forward again to my life P.C. (post-cancer). When I recovered from my first surgery, I realized that without all those tumors inside me, I felt better than I had in at least a year. Possibly since before I had had kids. So I kept working out. And during the IP chemo, which I was told came with “crushing fatigue” (boy, did it ever), I kept working out. Some days just a lurch down to the bottom of the hill and back, but I got moving. It helped me to feel in control of my body, in control of my life, in a disease process that is totally out of the patient’s hands in so many ways. It gave me time to think things through while I staggered, and make some personal decisions without interruption. I’m convinced that having a pretty high percentage of muscle mass helped me come through the six rounds of IP cisplatin as strongly as I did.

Once chemo is over, every time, and I start crawling out of the pit, exercise helps me feel like a normal person (at least until I catch sight of my squishy, pale, bald self in the weight room mirror). It helps me get my energy back sooner than I would have just waiting inside my house. It helps me get rid of the carbo-belt that develops around the waistband of chemo patients, thanks to the fabulous anti-emetics available nowadays and the raging cells looking for sugar.

Today, I found a study that shows how cancer patients that get regular exercise have more vigor and less emotional distress than cancer patients who don’t. (Sign up for a free MedScape account to read it – they have great articles.) Which I probably could have told you without the grants and the patients and all that time, but now we have proof.

So my advice for cancer patients: GET UP. Lurch down the hallway and back again. Once you can do that five times, add some stairs. Go for a swim. Walk the dog. Go down to the end of the driveway and get the mail. Once you finish chemo, treat yourself to a gym membership or a daily walk with a friend, and keep moving. The oxygen will help your body recover; the muscles will burn off the spare tire, and the companionship will keep you coming back.

Look, I love an afternoon in a comfy armchair with the cat and a good book as much (and probably more) than the next girl. But it isn’t going to prolong my life the way being in shape will.

Besides, the chair and the cat will still be there in an hour.

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‘Cause You Gotta Have Faith(?)

March 10, 2010 at 8:42 PM (Faith) (, , , , , , , )

A friend posted an article today about how most Americans think God gets involved in what happens in their daily lives. One in three of the surveyed respondents agreed with the statement that “‘There is no point in planning a lot because ultimately my fate is in God’s hands.'” Once I’d recovered from my initial shock at the statistics, I read some of the comments at the bottom. Which proved to me that: a) NYT.com readers are either cynics, or liberals, or both; and b) the pollsters whose data is represented in this article were not asking questions in Manhattan.

I also started down the long path I’ve been on a few other times since 2006, about where my religious flag should be planted. Raised in the Protestant tradition but with an overarching sense of scientific skepticism, I did the whole Sunday School thing, and even confirmation and Youth Group through high school, but more to meet boys (yet another bonus of single-sex education) than for any church-y stuff, which made me more than a bit uncomfortable.

There’s probably nothing that’ll get you thinking about God quicker than a serious illness. Not so much when I was first diagnosed, but definitely when I found out about my first recurrence; I was making deals with God (or whoever) like Monty Hall on speed. Just one more month and I’ll never ask for anything else. Just one more year with my kids and I’ll never complain again. Just let me see them into middle school and I promise I’ll enjoy even the crappy weather. Just let me make fun of them at their rehearsal dinners and I promise I’ll go quietly. But I wasn’t really sure who I was petitioning.

And I can’t really tell you that I believe my bargaining worked. I get surgery from one of the best gyn/oncs in the Northeast, and I get medical and chemical treatment from one of the top cancer centers anywhere. Do I think God guided me to live in Boston? Um, no, that was a cute guy with a great smile. Do I think there’s some mystical, divine force behind my getting sick in the first place? Wow, I hope not. Lord knows (sorry) I don’t think that whole “You only get given what you can handle” thing holds any water, because there are people who get sick who can’t handle it. They’re also deceased. And I don’t think it’s fair to those of us who pull ourselves out of bed by our wigs every day and march onward, for our families, our kids, our sanity, to say it’s all in God’s hands. That’s selling us a little short.

This summer I had a long conversation with the Reverend who is the head of the church I got married in; I wanted to put a more adult spin on my views than my previous what-I-think-about-God chats, which were brief, giggly, and in the ’80s. Maybe I was looking for proof (I know, that’s not what happens – that’s why they call it “faith”), or an explanation of how this stuff can happen, or validation that it’s okay to be confused. The result of our hour-plus-long chat was…hmmm. He didn’t try to get me to make up my mind, which I appreciated. And he didn’t try to convince me that this was all part of some grand plan, which I appreciated even more. I’m certainly not any closer to understanding how some people can so blithely relinquish control of their fates and responsibility for their actions to a divine being that no one can ever prove exists.

So for now, I’ll continue to put my faith in the vanguard of western medicine, top-notch whole food, vigorous exercise, a healthy dose of laughter, and a good under-eye concealer. But if I make it to my kids’ rehearsal dinners, I hope I don’t have to go apologize to someone. Not a big fan of crow-burgers.

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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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Kids Say the Darndest Things, Vol. I

February 9, 2010 at 4:11 PM (Energy, Family, kids, Sleep, Uncategorized) (, , )

I was heading off for my daily kip when I realized that I had put the blanket and comforter from my bed into the wash, and they weren’t finished yet. Never one to let a minor inconvenience come between me and forty winks, I stopped by the playroom to ask my five-year-old if he would mind if Mommy borrowed his comforter to wrap up in for her Quiet Time.

He looked up at me with his big brown eyes, and in the sweetest, most concerned voice, asked, “Will it get cancer on it?”

You can’t make this stuff up.

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More Cancer Karma

February 1, 2010 at 7:52 PM (Karma) (, , , , , , , , )

Once I had this blog up and running, I spent some time fleshing out the peripherals and racking up a pretty sweet blogroll. There are quite a few sassy cancer babes out there and some of them are terrific writers, too. It’s startling/depressing/comforting to discover that one or two of them seem to be living lives that are parallel to my own: young kids, solid marriage, suburban poster children, fighting like hell, still putting on makeup. Naming their wigs.

I don’t want to seem like I’m shamelessly trolling for readership, but the reason I started blogging in the first place (aside from a little ego-stroking) was to link up fierce cancer babes all over and build some support, outside of the established cancer communities, for keeping sane and surviving with your personality and sense of humor in tact. So I started dropping some comments on the blogs that really hit home – experiences I could relate to, really poignantly aching displays of honesty, hysterical tales of mishaps and chemo-induced forgetfulness. And one of the babes who read my comments and wrote back was My Name Is Not Cancer Girl, who’s knocking BC on its butt in the ATL while taking care of her family. And naming her wig. Now we read each other’s blogs and offer support and wiseacre commentary, just like I had hoped.

Last weekend I got an email from an old school friend (thank you, facebook) who wanted to introduce to me a dear friend of hers who’s fighting cancer, with a new bone metastasis, in Atlanta. I wrote back to say that I’m always happy (well, you know what I mean) to meet a new cancer chick and share tips, gripes, horror stories, etc. As I was writing the body of the email, I had a little tickle in the back of my brain… “Is there any chance she blogs? I asked. Bet you can’t guess the answer.

Karma? Coincidence? What do you think?

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Save Money: Get Cancer!

January 26, 2010 at 4:24 PM (Age, Energy, Hair, Silver Lining) (, , , , , , , , , , , , , , , , )

Recent articles in the media may give you the impression that cancer can be expensive. So expensive, in fact, that many patients need help in paying for their treatments. But I’ve put together a little list of the fantastically fiscally responsible features of this insidious illness. Check it out:

Baldness: Eliminates costs for hot water to wash the hair, electricity to blow-dry and straighten the hair. No shampoo, conditioner, frizz serum, or hairspray. No salon appointments, cuts, color, etc. No razor blades or shaving cream, waxing or eyebrow appointments. Average annual savings: ~$2,500 – 3,000.

Fatigue: Depending on your pre-cancer social life, savings can be significant. No cost for movie theaters, club cover charges, bar tabs, or concert tickets. (Who could stand up for three hours straight?) Deduct the cost of increasing your cable selection or increasing your Netflix membership, but average annual savings: $500 – 3,000.

Figure changes: Who knows what size you’ll be next week? Depending on your treatment protocol, you could be pumped full of fluid, plumped up on steroids, recovering from surgery, or in no mood to eat. And since the only places you’ll go will be the drive-thru at the pharmacy or a medical facility, you’re going to be looking for comfort anyway. Buy some yoga pants and this fleecy-lined sweatshirt in three colors each and you’re all set. Shelve your shopping addiction until your shape has settled. Average annual savings: $1,000 – 10,000 (depending on your habit). [NOTE: I didn’t really do this, but hypothetically, it could work. Nothing could stop me from shopping. Nothing.]

Feet: Don’t need heels (see reduced social life). Don’t need new trainers (see fatigue). Yoga doesn’t take shoes, and besides, your feet hurt. Get some snuggly boots or comfy soft slip-ons and relaaaaax. Average annual savings: $250 – $750+.

Nutrition: Eating out is limited to take-out, since who wants to be perky enough to be in a restaurant for an hour? People will be bringing you food since you’re too tired to cook, and other than that there’s a case of Ensure in the cupboard. Bananas and yogurt will round out the selection. Average annual savings: $300 – 1,000+.

Reading: You can cancel your magazine subscriptions. People will bring you the current issue of every trashy Hollywood tabloid, and, if they’re really good friends, shopping bags full of shelter mags. Plus, you’ll be spending a ton of time on the internet doing treatment research, reading killer blogs and connecting on i[2]y.com. Average annual savings: $50 – 300.

Home decor: for the first two weeks at least after your surgery, friends and relatives (especially those at a geographical distance too far to visit) will send flowers. LOTS of flowers. Plants, cut blooms, and, if you’re lucky, gorgeous bouquets from Winston’s. Since you’ll be a little immunologically compromised, the nurses won’t let you keep flowers in your room, so they’ll all have to go home. Which means that no one will notice the dirty slipcover on the armchair or the fact that the neglected and frustrated dog has eaten the doormat. Average annual savings: $100 – 500+.

See? Now run right out and tell your favorite cancer patient to quit their caterwauling about health insurance, co-pays, and pharmacy costs. This ought to cover at least one and possibly two recurrences of even the most hideous diagnosis. Right?

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How To Help A Cancer Patient, Part I

January 19, 2010 at 8:00 PM (Family, Help, Treatment) (, , , , , , , , , , , )

When you first hear the words, “You have cancer,” instantly a million things pop into your head. If you’re like me, after the initial “Holy sh!t I’m going to die” comes, “Who’s going to run carpool this week?” or “Oh, no, my house is a disaster area and people will be coming over.”

Once other people hear you have cancer, they unfailingly end every conversation by saying, “Let me know what I can do to help.” But at the time, you can never think of anything, and then when you think, “Wow, I wish I had someone to walk the dog tomorrow…” you can’t remember who it was who offered to help (chemo brain). How can something so generous turn out to be such a royal pain?

Within about forty-eight hours of my surgery, my crack research team (read: family members with internet connections desperate to DO something) had located the best Gyn/Onc in the area for my case, researched the then-hot-and-trendy-new IP chemo protocol, sent Edible Arrangements, and hooked me up with a lifesaving website that would feature prominently in my treatment and recovery plans for the next three years (and may come around again).

Lotsahelpinghands.com is a website that allows an administrator (you? your BFF?) to set up a free homepage for the cancer patient and their family, friends, and supporters, who log onto the site and sign up with a password once they are invited to join. The administrator sets up “tasks” – events as simple as picking up drycleaning or running to the grocery store, or as complicated as making a meal with specific dietary requirements (not too spicy, the kids don’t eat tomatoes, etc.) and bringing it over to your house. The sky’s the limit; my administrator set up “daily laugh” tasks so people would send me email jokes, and people from my then-kindergartner’s class signed up to host playdates for him and his little brother. I had people weeding my garden, raking leaves and planting mums in the fall, and delivering more delicious dinners than any one family could eat in a month of Sundays, except Mr. Wonderful was involved so we ate it all.

The BEST thing about lotsahelpinghands (aside from it being free) is that it gives the overwhelmed family a way to pass off some of the crazy-lot of organizing that comes with the new regime. And the seemingly unceasing refrain of “How can I help?” has an easy outlet: sign up for the website and start taking on tasks.

The OTHER best thing about lotsahelpinghands is that it taught me to let go a little and lean on others. My family is so self-reliant (and Mr. Wonderful and I slight control freaks) that allowing other people to take over and fold my laundry was nearly painful at the beginning. But as my kids and I got more used to giving up some control so we had more time to be together as a family (especially important when it seemed there might only be a couple more years) I realized that it was one of cancer’s silver linings. My boys learned the value of doing for others, and we now are honored to pay it forward whenever we get the chance. The sense of community may have been more instrumental in my survival than the chemo.

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