Cancercoaster
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.
Help Me Help You
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.
- 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.
- 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.
- 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.
- 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.
- 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.
Cancerversary
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.
Kids Say the Darndest Things, Vol. II
Well, husbands do, too.
Mr. Wonderful will be running a relay marathon in May, from Boston to Provincetown in two days or some such madness, up all night and riding in one of two vans with eleven soon-to-be-war-buddies while carbo-loading. Some of the group met for a pre-race strategy session/beer tasting at a local watering hole last week, which gave the friends-of-friends a chance to get to know one another.
My friend-whose-idea-the-team-was sent me a message after the meeting was over:
“Last night we were finding out how many at the table were divorced or divorcing (5 out of 7 – yikes!) and Mxxx asked [Mr. Wonderful] if he was divorced and he sweetly said, “No, I’m trying to hold onto my wife as long as possible.” =) Go give him a big fat hug and kiss!”
::sniff, sniff:: He’s the best. I’m a lucky gal.
(It’s okay to go barf if you need to.)
Non-Cancer-Patients Have Feelings, Too
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.
How To Help A Cancer Patient, Part I
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.
Making A Silk Purse Out Of A Swine’s Ear
We had the perfect family vacation week planned. After returning from the weekend in Philadelphia over Christmas, Mr. Wonderful was going to take the week off. We were planning a big New Year’s Day Open House party, something I’d been wanting to do for years (see my overcommittment issues posted earlier); I would have time to get to the gym every day, do some long-overdue organizing projects; ship hand-me-downs to the cousins in Cali; learn how to play Wii with the kids.
Well, we all know what happens to the best-laid plans of mice and men. And cancer chicks. Wednesday morning as the whole family was packing up for a day of snowboarding on the local hill, I realized I was feeling sort of achy, a little coughy in the back of the throat. First time I was going to be on skis since the ’80s, I was reluctant to back out – I’m a little sensitive about the three boys doing things together without me, as it feels like foreshadowing, and I’m not ready to relinquish control yet. But common sense (fortunately) got the better of me, and I decided to stay home, clean up, get the house ready for the influx of guests, etc. etc.
And a damn good thing, too – by 10:30 I was shivering on the couch in all-wool clothing and a throw blanket. By 11:30 I was in bed and on the phone with the Cancer Factory. Fever: 102 and change. Body: achy. Head: throbbing. Z-pack prescribed, I passed out, after receiving strict orders to escalate to inpatient IV antibiotics should I get any worse.
What the $(%&… I had JUST remembered to ask for the flu shot two weeks earlier at my last infusion appointment. “Do I need the H1N1?” I asked. “No, I don’t think it’s necessary,” replied the nurse. “Just seasonal flu.” Arm stuck, fears quieted. Now why am I lying in bed? Clearly, the swine had struck.
Four days later, I crawled to the surface. I had watched every cheesy Best-of-the-Decade TV show, learned how to cook countless holiday dishes, and finished an entire previous season of Biggest Loser. And while I was laid up, I kept having flashbacks of being sick, and remembering how much I HATE it. Not that lying in bed with my cat watching TV and napping isn’t nice, but the world keeps on turning without me. Mario Kart marathons were won. Photographs were taken. Meals were eaten, funny stories told. Like the kid who’s not in on the joke, I was reminded that there is, and will continue to be, life without me. Am I sad? Am I happy? The jury’s still out.
Short story long: the party’s postponed until tomorrow, when I’ll happily surround myself with the manic cacophony that is life in the ‘burbs when all your friends have kids under ten. And I have a renewed respect for the shopping-cart wipe-down station outside my Trader Joe’s.
Home Again Home Again
In The Middle Place (you’ve read it, right?), Kelly Corrigan talks about how when she learned of her breast cancer diagnosis (as a young mother of two living in San Francisco), she wanted to race across the country to the house where she was raised, climb into her father’s lap and curl up. I remember feeling exactly the same way when I was first diagnosed. Whether because of my strong relationship with my parents or the remembered childhood comfort associated with the house my family still lives in, there was something visceral about my need to be protected that obliterated my (healthy) marriage, responsibility to my children, or my established life in Massachusetts. I wanted to hop on a plane, leap in my car, lasso a camel, whatever, to get home as quickly as possible and retreat to the insulated cocoon of peace and security that my parents’ house had become in my mind.
To this day, I still hold trips home in a special place, maybe more than your average grown-up-who-lives-elsewhere looks forward to holiday visits. There’s something so familiar (I originally typed “familial” – unintentional but appropriate substitution) about the house, neighborhood, people, stores, that fit neatly in my subconscious in a way that needs no thought… I can get places in my car without thinking about the route; finish or restart old conversations without losing track of the topic; pick paperbacks out of my bookcase and remember having read them years ago.
Of course, there are always the annoyances that I tend to gloss over in my rose-colored haze, the lack of closet space, the same arguments, same family dynamics. Some of this stuff has been going on for so long that I might feel uncomfortable if there were resolutions at this point – how would we know where to seat people if no one were arguing anymore?
So as you sit down with your families this season, take a moment to think about where you’d go, where you would really want to find yourself, in a moment of crisis. Then take your favorite people and go there. Give them each a hug, eat a big meal, and sleep soundly.
Merry Christmas.
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
The Carcinista 
