A Hundred Gs, Part II
We ate so many of these it's scary. And delicious.
On Thursday night before Christmas, while Mr. Wonderful and I were just settling down to another exciting read of The Deathly Hallows with the cherubs, the doorbell rang. Seven o’clock? On a weeknight? (Good grief, I hope it’s not carolers – usually four or five glöggs into their celebration, they force you to stand, freezing, in the doorway and smile inanely while they try to remember the words to “Good King Wenceslas”. Erm, sorry — back to the story.)
Mr. W went to open the door, and up the stairs trooped old friends, neighbors, new friends, their families and kids, totaling about ten merrymakers. After hugs and introductions all around, the Organizer, I’ll call her, and her daughter passed me a big folder full of notes and drawings, plus a beautiful, handmade card with a big wad of cash. “What’s this?” I asked.
“We know you already bought your boots, but a bunch of your readers and supporters got together and took up a collection for you, so you have some mad money to have fun with. Buy clothes, books from your reading list, take your boys out for dinner, whatever you want. Just enjoy it,” Ms. O said.
It was a big pile of money, and I was really floored. See, I’m not used to being the center of attention, and I felt very humbled by everyone’s generosity. More hugs all around, and wishes for Happy Holidays, and they were off. I felt very warm and fuzzy as we went to find out what the Dark Lord was up to that night.
It wasn’t until the next morning, during a lull in the packing for our weekend trip to Norman-Rockwell-gorgeous Vermont, that I had time to sit down and really examine the folder full of notes. Not only was there the beautiful card and generous gift from those who gave cash, but there were at least ten more notes, checks, and gift cards from other blog-readers and assorted supporters from all over my life: neighbors, friends-of-friends, college friends I haven’t seen in twenty years, Mr. W’s co-worker friends. I was rendered completely speechless. (And you can imagine how difficult that is.)
My initial reaction was, “I don’t deserve this. I’m going to donate it to Ovations.” Mr. W talked me out of it: he said, “These are people who gave to YOU to help you feel better while you’re feeling horrible. They want you to spend it for yourself, to make you happy. Use it, enjoy it. You deserve it.” I felt guilty, I felt greedy, but I could feel the love in all the notes, heartfelt kids’ drawings, and expressions of uplifting support, so I stopped.
And switched it to gratitude. I know that people who love us, people who read my blog, wish there were something they could do to help me get through this disease. So when the opportunity arises to bring casseroles, Christmas cookies, or donations to the Carcinista Couture Collection, they jump. They help. They get gifts from giving, too. That’s what the whole Christmas-present thing is all about.
Gratitude. I’m full.
With heartfelt thanks to Ms. O and her co-conspirators, The Instigator (BKJ), TLP, TEA, SHB, SM, SMH, KFS, JQP, JBB, H&GP, JPW, JWF, HM, K&RS, DS, and anyone else, in my chemo-brained stupor, I might have missed. You have no idea.
Photo credit here.
Someone Called the Hotline
Well, well, well. SOMEONE has been doing their homework, faithful supporters. When I sent out my plea for more focused energy and good wishes, prayers, karma, etc. etc., I must admit I wasn’t expecting such immediate and obvious results!
I arrived at the Brigham today fully expecting to leave with a hole in my back and a bag of pee hanging off my hip, and I wouldn’t be lying to admit that the thing I was most disappointed about is my then-inability to wear skinny jeans tucked into my fabulous new cancer-kicking boots. But I bucked up, since losing a kidney altogether wasn’t really in my game plan either, and plopped in the waiting room to finish a two-week-old People until my buzzer went off.
I was escorted down to the prep area, and asked to wait before changing (into another dynamite johnny/slipper socks ensemble) for someone from Radiology to come talk to me. This wasn’t a surprise; I was expecting just a conversation about conscious sedation or something, so I laid back and closed my eyes for a few.
The cute Radiology doctor came and shook my hand, and told me she’d been on the phone that morning with my urologist, Dr. Kenneth Branagh. It seems that sometime between my 11/19 CT scan, which showed the hydronephrosis (swollen left kidney) that required stenting, and last Wednesday (12/15)’s CT scan, the situation resolved itself. No, for real. The blockage is still in the ureter, which meant that the stent couldn’t go up, but it must not be a complete blockage. There is no swelling of the kidney at all, and my kidney function is totally normal, creatinine at 1.1.
I was so gobsmacked I thought I was being Punk’d. (And, frankly, a visit from Ashton Kutcher really would have been the icing on the cake.) I said, “So, basically, Merry Christmas to me?” And she said, “That’s what your urologist said!” Then after a nurse de-accessed my port, I wandered upstairs to tell my friend/ride that we were free to go, and came home for a Class A, stress-free nap. Bag-free, too. Everyone here at Casa Carcinista is doing a little happy dance tonight.
So what I need to know is, to whom do I send the thank-you note?
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.
More Cancer 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?
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 
