Ovarian Cancer Awareness Month? Hmmmm….

September 22, 2011 at 10:43 PM (Awareness, Faith, Family, friends, Help, Karma, Real Life, Research, WTF, Zen) (, , , , , , , , , , , )

September is Ovarian Cancer Awareness Month. October, AKA “PinkTober”, is the month we think of Breast Cancer. And, apparently November is Lung Cancer awareness month. December? Not sure, but I’m sure there’s a cancer for that month, too. Don’t you think it’s a little ironic we try to remember different cancers on different months throughout the year?

I do.

On a Thursday in May 2006, Sarah was diagnosed with Ovarian Cancer. She was blown away. SHOCKED! Maybe if we’d paid more attention to Ovarian Cancer Awareness Month she might have checked earlier? Who knows. She used to say that sometimes she was a “stick-your-head-in-the-sand-when-something-bad-comes-up” kind of girl.

So, this September, I want to point out that any cancer can crop up at any time. It’s scary and an unfortunate reality we live with. During the five years Sarah fought her cancer, two other very dear friends died from their cancers – a melanoma and a rare sarcoma.

As Sarah became closer to a much larger community of men and women who were fighting all kinds of cancers, we lost even more new friends. BUT, we also gained many new fiends and most are survivors today. I’m counting our collective blessings for that.

The ovarian cancer thing really gnaws at me. Mostly because there’s stuff people should know and can do about it. The first thing you should ask is “what are the symptoms.” Because knowing them and paying attention to your body can save your life. Did you know that ovarian cancer goes undetected far too long, too often? It can be one of the most deadly cancers for women. Not because it’s not treatable, but because once it gets to stage 3 or 4 it’s much harder to treat and often returns over and over and over. The earlier it’s detected, the better the chances for long-term survival!

Okay, okay. I hear ya! Here are the symptoms:
– Bloating
– Pelvic or abdominal pain
– Trouble eating or feeling full quickly
– Urinary symptoms, such as urgent or frequent feelings of needing to go
– Feeling tired more than usual (not usually listed, but this was big for Sarah)

Early stage ovarian cancer CAN be detected via these symptoms. No doctor in their right mind is going to think you’re crazy for asking, especially if you say you’ve been having more than one of these symptoms.

This summer, after Sarah died, I heard many stories of woman getting checked because of Sarah’s story. Unfortunately, at least one was diagnosed with ovarian cancer. The good news? They caught it early! And she’s being treated. If she hadn’t been checked she could still be wondering, and getting worse.

I’ve also heard stories of women who got checked and were given a clean bill of health. Taking the worry off their shoulders when they were feeling a little uneasy. Music to my ears (and I’m sure to theirs).

Earlier this spring, I went to my dentist and he saw a spot on my tongue. They said I needed a biopsy to be sure it was nothing dangerous. Whoa! This is my tongue we’re talking about. Kind of important! Yes, it freaked me out a little, but I knew I had to do it.

The surgery was a little painful, because they had to cut a small chunk out of my tongue. (During the painful stuff, I thought of Sarah for strength.) The spot turned out to be nothing, THANK GOD! And, the hole in my tongue healed up very quickly. There isn’t even a scar. Weird. But, best of all, I’m healthy, and not worried.

When you talk with your doctor, make sure you go armed with lots of questions. Ask whatever you want and don’t let them go until YOU are satisfied that YOU got what YOU need to know. Asking pointed questions about this stuff can save your life. If you don’t feel like you’re getting a satisfactory answer from your doctor – or they blow you off (yes, I have heard of this happening all too often) – then go see another doctor. I know! It’s a pain in the butt and takes extra time out of your busy day, but what are a few hours when you could be adding years to your life?

I’m sure Sarah would agree with me. She wished she’d gone to the doctor long before she actually did. She had reasons why she had held off. Things like just not wanting to deal with it. Or saying to herself “well, I’m young, I’m healthy, it couldn’t be anything bad.” And of course she was exhausted and didn’t really want to go see a doctor. I probably could have pushed harder, too. But, hindsight is 20/20.

On a Tuesday in May 2011, Sarah died. It was 5 years after she was diagnosed.

Now, in May or September, or any other month for that matter, make sure you remember the signs for ovarian cancer. Whether it’s you or a loved one, if there’s concern, go get it checked out. Better safe than sorry.

To close today, I would like to share a quick story from a friend, Dawna Leger Phillips, who recently said her own good-bye to Sarah while on a Buddhist retreat. Here are some of her words and a photo:

“The Great Stupa of Dharmakaya is located on the 600 acres of Shambhala. It is said, “anyone who approaches a Stupa with a pure heart and the intention to benefit others will receive its blessings.” On my last day at Shambhala, I walked to the Stupa and made a final offering. As I placed the Ovations for a Cure bracelet, which I had been wearing more times than not since Sarah’s death, on someone else’s offering of C3PO*, I spoke these words, “Sarah Sadtler Feather, wherever you are, may you rest in peace, may your heart be open and your body strong” and then I let her go, I let her be… It was not an attempt to forget about her but, instead, to detach myself from this part of my past and to simply let her be on her way and to let myself be more mindful of every present moment. This was one of the gifts given to me at Shambhala. I am learning to let go; to trust; to be gentler with myself and with others; to become more peaceful, tolerant and compassionate; and to be more present in the tiniest of moments that make up my big life… I’m still learning…”

Photo by Dawna Leger Phillips

*For those of you who knew Sarah, you will fondly recall her sense of humor and her love of fashion. You might also recall her boys’ love of Star Wars and her naming her home oxygen tank R2D2. I thought Sarah would find humor in the placement of my offering as a sash across C3PO. It is as if he’s saying, “Thank you! So long! May the force be with you!” 🙂

Thank you Dawna!  I agree.  May the force be with us all!

Much love,

Mr. Wonderful

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Honoring Sarah Sadtler Feather (The Carcinista)

May 5, 2011 at 11:27 PM (after chemo, Family, friends, Real Life, WTF, Zen) ()

Sarah Sadtler Feather (AKA, The Carcinista) died at home on Tuesday, May 3, 2011 in the early afternoon.

Sarah was surrounded by her family and close friends for the days leading up to her death. When not sleeping, she spent time with her boys playing board games, reading books and having family meals. Sarah and Mr. Wonderful stayed very close to each other, cherishing their love and 18 wonderful years together. Her mother, father and sister and several very close friends shared family stories, memories and comfort. When Sarah died, we were all there with her, holding her to the end. She was truly brave; the embodiment of grace.

Sarah asked that, in lieu of gifts or flowers, donations be made in her honor to First Descents or Ovations for the Cure.

To honor and celebrate the life of Sarah Sadtler Feather
We will have two memorial services to help accommodate Sarah’s friends and family (per Sarah’s wishes) in the Boston area and in the Philadelphia area. She has so many friends and supporters and we want everyone to know they all are welcome.

Please join us in this celebration at either of these services:

Date: Friday, May 13, 2011
Time: 10:00 am
Location:  Trinity Episcopal Church, 81 Elm Street, Concord, Massachusetts 01742

——————————–

Date: Monday, May 16, 2011
Time: 11:00 am
Location: St. David’s Episcopal Church, 763 South Valley Forge Road, Wayne, Pennsylvania 19087

With love,
Ed Feather (Mr. Wonderful)

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Someone Called the Hotline

December 21, 2010 at 6:02 PM (Faith, Family, friends, Treatment, WTF) (, , , , , , , , )

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?

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Too Many Chiefs

September 3, 2010 at 4:31 PM (Research, Treatment, WTF) (, , , , , , , )

I’m getting tired just thinking about explaining all of this, but I know you all wanna hear it.

Last week… no, wait, back up.

Two weeks ago, when I had my last CT scan (and waited FOUR HOURS for the results), Phase I oncologist (we’ll call him Dr. B) said that I should set up an appointment with my medical oncologist, the one who’s overseeing my case (we’ll call her Dr. A) as soon as possible, since she’d probably want me to stop taking the Magical Mystery Drug (the one that was no longer suppressing my lung metastases) and go back on chemo. So, like a good little girl, I ran home and made the appointment.

This Tuesday, when I met with Dr. A, the first words out of her mouth were, “So… what can I do for you?”

I was a little surprised that she wasn’t already aware of what Dr. B had thought, so I said, “Dr. B said that since the trial isn’t keeping down my lung mets, you’d probably want to pull me off it and put me on chemo.”

“Oh… from the email he sent me I thought he wanted you to keep going with the trial?”

::crickets::

“No, he told me you’d want me to do something more aggressive about my lungs.”

After a little back-and-forth, and telling her how crappy I’d been feeling for the previous ten days, she got on board with the chemo idea and came to the conclusion that since I hadn’t done carboplatin for a year, we could do that in combination with Alimta, and start on Tuesday (because I will NOT reschedule another First Descents trip!). Dr. A told me her scheduling coordinator would call me about appointment times for Tuesday, and shook my hand. I left her office pleased to be ending the nasty pills that have started giving me day-long nausea and still taste like dirty ashtrays, ready to switch tactics and get back to the business of kicking cancer’s ass.

Once I got home (of course), I realized I hadn’t asked whether to keep taking the Magical Mystery Drug for the rest of the week until starting chemo on the seventh. I called first thing (at the crack of 9:00) Wednesday, then airily skipped through my day waiting for a callback, without the pills, loving the taste of a glass of water and my freedom from being close to indoor plumbing.

Wednesday night at 8 I discovered a message on my answering machine from about 4:30 in the afternoon that said, “Please keep taking your study drug indefinitely.” Uh, what? I thought I was starting chemo.

Yesterday as I was waiting at school pickup for the boys, I got a phone call from the Phase I nurse practitioner, I’ll call him Angel, who asked how I was doing. I told him I felt lousy, and explained the mixed messages I was getting from the two different departments, and that no one seemed to know quite what the heck was going on with my plan. I told him, “There are too many chiefs here.”

He said, “Well, this little Indian is going to get to the bottom of things and I’ll call you as soon as I know.” Sweetie, you’re the best.

This morning, I left a message for Angel, just to check in and remind him he was working on something for me, since I could totally see the holiday weekend creeping up and not hearing from anyone until I just showed up on Tuesday at the crack of dawn. By the time I got home from the dog park, I had a message from the Phase I trial coordinator with my schedule for Tuesday’s appointments, which sounded a whole lot like my regular trial schedule. Grrrr… I waited for a call back from Angel.

At 12:45 he called and told me that we’ll check my CA-125 on Tuesday morning, and if it’s dramatically higher again (from 74 to 90-something at the last check) they’ll pull me off the trial and start chemo that morning. But if the CA-125 is stable, I’ll stay on the study drug. At least I knew what was going on, and that everyone was now on the same page.

Does anyone else think that with all the money being generated by and donated to The Cancer Factory on an annual basis, they might be able to spare the time for slightly more thorough inter-departmental communication? As opposed to, say, f*cking around with my life and my schedule like government employees?

God, I hate waiting. Have I mentioned that before?

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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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Throwing It All Away

March 23, 2010 at 4:52 PM (Karma, WTF) (, , , , , , )

Call me crazy, but having come this far, I’m not really eager to just bite it in some offhand way. Thus it makes me really hot under the collar to see other citizens making stupid decisions, especially if those decisions include me.

Yesterday on the way home from (surprise!) Trader Joe’s, Avery and I were merrily chatting and generally enjoying each other’s company on the local Major Shopping Route. Our usual way home, down an off-ramp and through a traffic light towards our side of town, looked crowded (I’m a little touchy about sitting at a light if I don’t have to), so I chose the alternate route under the intersection and on to the next side street. As I continued down the right lane of the four-lane, divided highway past the beginning of the exit ramp, at a reasonable speed, a young lady in a small sedan PASSED me on the left, then BRAKED, merged in FRONT of me and off the right onto the exit ramp, BRAKING to get behind the car (exiting) that had been less than a half-car-length in front of me. By standing my car on its front bumper, I was able to skillfully avoid pasting her with my Viniman.

It probably goes without saying that I used my horn. Continuously. Until I looked over at her incredulous expression (“WhAAAAAt?”) and the TEXTING DEVICE clutched in her left hand as she drove up the ramp.

I’m probably not the most understanding person in this situation, being one who uses my cell phone for making calls, and then only eight or ten times a week at most. I don’t text and don’t really understand the reason for texting (which may explain why it’s so hard to get babysitters to get back to me), and I CERTAINLY don’t understand why it’s so important to finish a text while operating a one-ton lethal weapon at highway speeds.

I can’t decide if this is the cancer talking (maybe), or if I’m just getting old (probably). But it annoys me a lot (more than it should, no doubt) to be fighting tooth and nail to survive another six months, a year, a decade, and see people with their whole lives ahead of them making stupid decisions that could end it all in a blink. Texting while driving. Smoking. Buying shopping carts full of lousy food. I want to approach the young man cowering in front of the rain-soaked office building cupping his Camel and whisper, “Psssst…Cancer sucks,” in his ear. I want them to understand that it’s not always going to be this easy to assume you’ll live forever.

And while we’re on pipe dreams, I’d really like an iPhone.

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Non-Cancer-Patients Have Feelings, Too

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

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

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

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

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

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

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

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Oh, Great: Ovarian Cancer Symptoms Poor Disease Predictors

February 4, 2010 at 8:44 PM (WTF) (, , , , , , , , , , , , , , )

Mr. Wonderful forwarded an article to me today – he’s good like that. Anyway, there was a study published in the Journal of the National Cancer Institute that says that symptoms are of little help in predicting whether a woman has ovarian cancer. That is, out of 100 women with classic ovarian cancer symptoms (bloating, abdominal or pelvic pain, bowel changes or frequent urination), only one woman may actually end up presenting with the disease.

“The low positive predictive value of symptoms to detect ovarian cancer—particularly at an early stage—argues for a cautious approach to the use of symptom patterns to trigger extensive medical evaluation for ovarian cancer,” the authors write.

I read this news as very similar to that brouhaha about mammograms from last year: why bother testing, since it’s not going to come out positive? Not cost-effective, ladies; please hit the bricks. Yes, the editorial accompanying the study results highlights how great it is to discover that in fact all the women who have ovarian cancer do present with symptoms; and yes, they do say that this study’s results highlights the need for more effective markers and predictive testing for ovarian cancer.

But with the state of health-care today (quick shout-out to Scott Brown: hey!), don’t you just envision the suits over at Major Health “Care” Conglomerate, Inc. licking their lips and checking off another reason to deny a CA-125 or ultrasound or laparoscopy? More importantly, it’s hard enough for many women to get a doctor to believe that there’s something really wrong when they complain of any of these classic symptoms – I’ve read too many horror stories about doctors diagnosing stress, esophageal reflux, constipation, and prescribing some Ambien and Prilosec and sending the woman on her way with a pat on the head, like Cindy-Lou Who. If this gets out, how much harder will it be to impress upon someone the seriousness of the situation?

And finally, perhaps the most frustrating part of this study is that, even with such “classic” symptoms for ovarian cancer, experienced by nearly EVERY woman who has the disease, early- or late-stage, THEY’RE SO POORLY PUBLICIZED. I’m a pretty well educated woman, I know how to take really good care of my body; why did I have no idea about the symptoms of ovarian cancer? There should be a poster up in every OB/GYN’s office waiting area and another one in the exam room, so while you’re waiting an hour and a half for your appointment you can read and re-read and memorize the symptoms and maybe have a chance at identifying them while you’re still save-able.

That’d be way more useful than an eighteen-months old copy of Good Housekeeping.

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