Cancercoaster

July 28, 2010 at 11:51 AM (Faith, Family, Mood, Recovery) (, , , , , , , , , )

Last night my husband and I were watching that new Tony Robbins series on NBC. The episode featured Tony helping a couple break out of their ruts: at their wedding reception in Mexico, the exuberant groom had dived into the shallow pool to swim over to where his wife and her friends were dancing, and broken his neck. Quadriplegic since that day, they had ceased to be newlywed husband-and-wife, and become nurse-and-patient. During the course of the show, Tony had the excited husband and terrified wife skydiving over Fiji to show them that there’s no limit to what a paraplegic can accomplish but his imagination. (It was a pretty great show, and I’m a cynic. But I dig transformations. Jillian’s my homegal.)

At one point Mr. Wonderful and I were talking about the wife and the role she’d settled into, and how she was paralyzed herself by her fear of losing her husband altogether, her sense of injustice at having to suffer through a life so different than the one she’d imagined. In mid-sentence, Mr. W started to well up, and as I grabbed his hand, he broke down. He said he was remembering the night of my first surgery, and how he’d been feeling all the same things: angry with the doctors; helpless at my illness; terrified of our new future and what it would bring; sad for me and what I would have to go through.

After a long hug, we moved on, but I realized that in addition to cementing our dedication to each other, the moment represented just another stop on the wild ride we’ve been on since 2006. Cancer diagnosis? Down. Find the right oncologist and a plan of attack? Up. IP chemotherapy? Way down. Finish treatment? Up. Nine months of remission and a big thank-you party? WAY up. Recurrence? Doooooown. You get the picture. Cancer patients and those who love them learn an incredible amount in the simple task of waiting: waiting for test results; waiting for scan results; waiting for the surgery date.

I’d love to say that a zen-like patient peacefulness is the result of all of this unpredictable change. But our reactions to the ups and downs have yawed wildly as well. Sometimes I’m able to accept a recurrence notice with resigned determination, while my mother bursts into (prohibited!) tears. Sometimes I come home from a simple office visit and a blood draw and snap at everyone in the house and Mr. Wonderful calms me down and gives me needed space. Other times he rages against his lack of control and we argue about something stupid like taking the last cold Diet Coke out of the fridge (a hanging offense).

I’ve had a busy month in the up-and-down department. From the down of intractable lung mets and decreased physical activity, I sprang back up with the great PET scan results, confirmed by CT last week. But not all the way up, because my left leg swelling kept increasing, and everyone (including me, in tears on Monday) feared it was another blood clot, which would mean blood thinners, which would make me ineligible for the trial that was saving my life (way down). Yesterday I had an ultrasound that showed no trace of a clot, meaning I am cleared to receive lymphedema massage and continue the trial (up Up UP!)

Which brings me back to my post on Friday about good support. By talking openly and honestly, and patiently listening without judgement, Mr. W and I have been able to weather the vagaries of this unpredictable odyssey. It’s definitely been a long learning process, with exemplary moments and embarrassing blow-ups. Often, the patient-listening-without-judgement has had to come in the form of an outside party, namely our therapist, who I maintain is a priceless aid in my recovery. But the result has been the smoothing out of the rough places that used to trip us and send us (and by “us” I mean our whole support team) spiraling off in different directions – now we hold each other up and ride on together.

Certainly the clichéd “fullness of time” has lessened the height of the peaks and the depth of the valleys. I prefer to think of it as a mosaic, or a Seurat painting: up close, each tile or spot of paint seems powerful, distinct; but with distance, the whole image becomes easier to see, the emotional shapes easier to recognize, the cohesion and strength of our family more visible.

I’ve never liked roller coasters. Too fast, too scary, too much stomach-in-the-throat. Since I have to be on this one, I’m glad I have reliable hands to hold onto. Who are yours?

Photo link.

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Family Friend Supports Cancer Research; Please Help!

July 24, 2010 at 7:40 PM (Family, friends, Help, Research, Treatment) (, , , , , , , )

Dorcas Ann Casey, on the right, with her mom.

Hi All:

I have a favor to ask. A good friend of mine, Dan Pike, is competing in the Ironman Lake Placid this weekend (2.4-mile swim, 112-mile bike, 26.2-mile run!) in memory of his cousin Dorcas Ann Casey, who lost her battle with synovial sarcoma, a rare soft tissue cancer, in 2008. Dan is raising $25,000 to support the Dorcas Ann Casey Fund that will benefit synovial cancer research at Memorial Sloan-Kettering Cancer Center.

Dorcas was the source of much comfort to me during the early stages of my cancer fight; she sent care packages with comfy slippers and yummy candles; she sent books of inspiration and letters of support. She and I had a rollicking time the last time I saw her (with my GI-Jane-short hair) laughing at the random ridiculousness of the whole cancer trip. I was so sorry to hear she’d lost her fight.

If you’d like to join me in supporting my dear friend Dan in his heroic task this weekend, please visit the link below which whill take you to his page on Fred’s Team, Memorial Sloan-Kettering’s site for fundraising.

To donate online:
http://mskcc.convio.net/site/TR?px=1771450&fr_id=1370&pg=personal

To contribute by check, please make checks payable to MSKCC, noting “Pike Ironman/Fred’s Team” in the memo line, and mail to:
MSKCC
Attn: Elise Cook, Annual Giving Officer
633 Third Avenue, 28th Floor
New York, NY 10017

Thank you all for your help – let’s keep fighting to get to a place where cancer is just a distant memory. Please feel free to forward this to anyone you know who will help!

Photo courtesy Dan Pike.

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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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Swimmingly

May 3, 2010 at 11:35 AM (after chemo, Family, Happy, Mood, Zen) (, , , , , , )

I’m not sure what it is about swimming that appeals to me. Probably not the part where you have to wear a bathing suit, although it’s hard to get a decent tan fully clothed. (That’s a whole ‘nother post, that one.) And it’s probably not the part where you get all wet and your hair goes nuts and your makeup washes off. (Gee, now I sound like a high-maintenance princess.)

I was on the swim team for years. Not fast, usually last. Practice went on forEVer, and you can imagine how appealing that was to the Class Couch Potato. I still wonder whether the only reason I did it was to keep my family from pestering me about never getting any exercise.

But I love to swim. In a lake, in a pool, in a river, in the ocean. The best part is swimming underwater as far as I can, trying to make it to the other end of the pool in one breath. Something about the isolation, the peace of the water bubbling past my ears, the dolphinity of the whole experience really zens me out. The blue of the pool, or the dark coolness of open water.

And then there’s snorkeling. Last week, after absent-mindedly skirting around the reefed edges of the cove beach where we were staying, Mr. Wonderful and I rented sea kayaks (!) and took the boys for an adventure to a small cay about a mile off the shore. When we had beached the boats, the boys and I explored the beach and the Custom House ruins, while Mr. Wonderful explored the apron of coral that wrapped around the south side of the cay. After half an hour in the water, he came ashore, handed me the fins and mask and said, “You won’t believe this backyard treasure.”

Compared to the anemic reef left on the mainland, this was like comparing the zoo to the African veldt. Huge schools of fish, forests of healthy coral, herds of black sea urchins gathered under overhangs. Riotously colored parrotfish crackling nibbles of algae and making sand of old reef. Angelfish the size of manhole covers. And all the while, the gentle sway of the waves and the quiet of my breath in my ears. I was overcome with the simplicity and peace of the scene, the utter irrelevance of humans to the intricate relationships playing out below me.

I stayed in the water until my goosebumps had goosebumps; giving up was almost unbearable, like leaving a loved one for a long journey. I could have gone back in and stayed for days, but we only had the boats for three hours. I didn’t snorkel again during the last three days of the trip – I guess I didn’t want to be disappointed if the next reef didn’t measure up. But the pool opens in two weeks…

************************************************************************************

There’s no way to capture an experience like that on film or video, so I’m sorry I can’t share it with you. Do you have a favorite meditative place?

The cay is on the right side of the photo. Best snorkeling ever. Photo courtesy http://www.maho.org.

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Hitting the Life-Reset Button

April 29, 2010 at 9:21 PM (Energy, Family, Recovery)

Every so often, life gets chaotic enough that I need to call a truce, a time-out. Too many obligations, too many dust bunnies, too much stress – I’m not myself anymore, and mama needs some sunshine.

We got back Tuesday night from eight days in my Happy Place, and I feel like I rebooted. I’m not sure the majority of my restored good attitude wasn’t due merely to the fact that I wasn’t cold anymore, or that the inside of my dried-out nasal passages no longer felt like I had stuffed porcupines up there, but i’m betting the beach and the family time had a little something to do with it.

Really, how often do members of our go-go modern society really get to check the heck out? To reduce the magnitude of our daily decision-making to whether to have a Corona or a rum punch before watching the sun set? Unspeakable luxury has nothing to do with white tablecloths and marble vanities, and everything to do with the freedom of mind to let go.

Our vacation distilled life down to the essence: a place to lay your head, a spectacular view, modern plumbing, good food, plenty of outdoor activities, swimming, and time with my family. No computers, no phones, no TV or video games… read a book and fall asleep to the crickets and the surf at 9:45. Wake up with the sun, HUNGRY, eat a big breakfast (prepared and cleaned up after by someone else, v. important), spend all day exploring (or, hey, napping) in the sun, eat more good food, go to bed. Repeat.

If you haven’t taken a break in a while, I really urge you to try it. Get a massage. Go out for a meal. Take the afternoon off. Take the week off. Try something new and scary. Reassess what you really need to be happy. Grouchy is no way to go through life. It’ll feel like a different world when you get back, I promise.

Cancer? What cancer?

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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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Kids Say The Darndest Things, Vol. III

March 26, 2010 at 9:53 AM (Family, kids) (, , , )

Last night at the dinner table, over our deLICious bowls of curried lentil soup, we were having a (typically high-brow) discussion of the effects of legumes on the, er, digestive tract. Somehow we got onto the fact that my system is significantly altered from its original state, and the A-man noted, “Mommy can’t have any more babies.”

“That’s right,” replied Mr. Wonderful. “No more kids for our family.”

Without missing a beat, A returned, “Yeah, she’s been neutered.”

[Kids Say… Vol. I; Kids Say… Vol. II]

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