Transformation, turning points and clarity in life.
Our great friend and fellow blogger and radio host, Mel Majoros, AKA “The Cancer Warrior“, asked me to give her some thoughts about cancer awareness during September, Ovarian Cancer Awareness Month. I thought about it and decided to do something a little different: two stories about transformation, turning points and clarity in life – both before and after losing Sarah to ovarian cancer.
For all you Carcinista fans, I think you will enjoy this. See it here.
Let us know what you think!
Be well,
Mr. Wonderful
Ovarian Cancer Awareness Month? Hmmmm….
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
All You Need Is Love
For spring break in April we visited a friend’s beach house on Buzzards Bay. Originally, we were to visit our happy place in the USVI, but Sarah’s breathing was constricted so badly she could barely walk to the car. She was on supplementary oxygen 24/7 and the amount she needed was increasing weekly. Travel by plane, let alone a trip with a 9 hour flight, followed by taxi, boat and truck rides would have been impossible. Not to mention having to walk up and down almost 200 steps every time you wanted to go to the beach or have a meal. For the fit, it was fun. For Sarah, it would have been hell.
Our dear friends offered their house, and we gladly accepted. It was perfect. Only one flight of stairs. And, with it being less than two hours from our house by car, we could take the kids, the dog, and all we needed for the week. Even a portable oxygen concentrator.
While Sarah slept most afternoons, the kids and I were more adventurous. Kayaking to the playground further down the bay. Visiting the local zoo. Walking the dog down to the point. Or just playing on the beach.
Sarah stayed inside the entire week, never leaving the house. She was comfortable and safe. Reading. Writing. Sleeping. Breathing. She watched her boys through the large picture windows as they ran along the beach, looking for sea glass and shells. Playing with the dog. Enjoying their youth.
We were together. We had this one week to be a family again. Just the four of us. No one else to help, or interrupt. Just us. Together each day and night for meals. Together for reading, playing games, watching movies, talking and snuggling. It was beautiful. We discovered that this vacation was about one simple thing: love.
It gave Sarah the strength to do what she had to do. It gave us the strength we needed for our journey forward.
Before she died, Sarah asked me to write a post called: “All you need is love.” I’ve been thinking about this now for more than two months. In the early days, just after she died, our love was the cause of the deepest pain I have ever felt. Such an incredible sense of loss for me and our boys. But I embraced the pain, accepting that she had reached the end of her amazing voyage. She and I had come to a place of peace long before she died. We knew the destination, just not when we would get there.
Now, the rawness of her death is gone. The deep, searing pain is gone. The frustration and sense of “what now?” has passed. Sarah would be pleased. I’m where she wanted me to be.
What’s left? The good parts of love. The part I remember when she was there by my side. When we held hands. When we ate dinner together as a family. When we would all hold hands and shout out, ONE… TWO… THREE… FAMILY!!!!! The beauty of being a family; it’s a really good, strong feeling that fills my heart every day. It’s not hard – all I have to do is look at our boys. I believe they feel it, too. I can see it in their smiles.
This week, we’re back at our friend’s house on the beach again. I had to work, so Supermom came back up and spent the week with us, taking care of the kids like the champ she is, while I made the long slog in traffic to and from Boston. It’s been really nice having her here. We all miss Sarah, but being here together makes it all okay.
As I think about all this love and how important it has been to our family, it has made me think of Sarah’s friends; OUR friends. So many people have grieved for Sarah and miss her in their own way. Yes, it’s different from how the boys and I miss her, but there are so many who loved her – and for many different reasons.
Over the past months I’ve discovered that different people express their love in different ways. Some send cards. Some make donations. Some call, email or post on FB to say “hi” and see how we’re doing. Some post on Sarah’s or The Carcinista’s FB pages to say they miss her or are thinking of her. Some ask us over for dinner or to spend the weekend with them. Some make things and/or sell things to honor her and make donations to her favorite charities. Some are running and biking great distances to honor her by raising money for cancer research and aid. Many are there for us whenever we need a little boost. And every one of those friends is taking time out of their busy lives to show their love in their own way. What works for them. What makes them feel better. And that’s okay.
So, no matter how love comes or is shown, sarah was right: love is special. It is the power that keeps us together when things get really tough. Sarah’s love will always be a part of our family. And we are glad that we’re able to share a bit of that love with you, too. And glad that you are willing to share a bit of your love for Sarah with us.
All you need is love.
Mr. Wonderful
Things I don’t have to worry about anymore.
Sarah and I sat together on the couch looking at her computer, trying to make sense of things. At the moment, she was in a place of clarity, somewhere between waves of a morphine-induced fog and cancer-induced exhaustion.
“Can I help?” I asked. “What other subjects would you like to write about? You said you had more to write.”
Sentences were shorter now. Not always coming as full thoughts. But this one was clear: “Things I don’t have to worry about anymore.” Her words were dry. I helped her take a sip from her glass of water.
“Okay, I understand.” We had talked about this before, and I knew what she meant.
Her body was weak. Her focus waxed and waned. She couldn’t hold anything up without help. She couldn’t type. But she was still Sarah, with big, beautiful smile and brilliant blue eyes looking out at all of us, surveying what, to her, must have been such an amazing picture of life. Thinking to herself…things I don’t have to worry about.
It was Monday, May 2nd. We knew what was coming. There was no stopping it. There were no more doctors. Just family and friends for support and love. And of course those helpful, pain relieving drugs. None of us wanted this, but we all knew it was reality. As Sarah and I would often say, “It is what it is.” It was as simple as that. And she had come to accept this.
Tuesday, May 3rd. Sarah died. All worries were gone.
Over the years, Sarah and I discussed, sometimes argued, about the things we worry about. Our therapist often helped us with these things. Bringing us to a better place. Better as a couple. Better as lovers. Better as parents. Better as friends.
We talked about worry and stress. What if we just didn’t have to worry? Is this what happens when you die? Worries just disappear? Maybe. Or, maybe we come to a place of peace, knowing that all those things we worry about in life will simply work themselves out – one way or another.
Is this what she meant when she said “I know I’m getting the easy way out?” Since she wouldn’t have to be concerned anymore? Worry would no longer exist?
Sarah may have been a cynic (and who wouldn’t be after five years of ups and downs from cancer, surgeries and chemo?), but I believe she became an optimist toward the end – seeing there really is no reason to worry. That our energy is put to better use in other ways.
So, what does Sarah NOT have to worry about?
1. Cancer and all its crap.
Say it with me: CRAP! CRAP! CRAP!
No more cancer. No more surgery. No more port. No more drugs. No more chemo. No more side effects. No more scans. No more waiting for results. No more wondering about the next treatment or trial – or if there will be a next treatment. No more wigs. No more hair falling out. No more hair growing back in. No more trips to the hospital during the day, nor in the middle of the night. No more oxygen tanks. No more possibility of further organ failures. No more catheters of any kind. No more injections. No more feeling like crap.
For the rest of us, cancer IS still here. Some of our friends are battling now. Some will win. Some may not. But, let’s keep hope alive. Sarah had hope. We can ALL have hope. Let’s not worry. Instead, look for cures. Look for ways to stay healthy. The Feathers will continue to send love and healing thoughts to all friends of The Carcinista who are waging their own war. Please stay well and know that love and caring is all around you.
2. Early Detection of Ovarian Cancer
Clearly NOT something Sarah worried about for herself. She caught it, but late. Really late. And this gave her more and more reason to want others to know the signs. Ovarian cancer is much more treatable in early stages. So, to help Sarah not worry, please spread the word.
Here are the symptoms:
- Bloating
- Pelvic or abdominal pain
- Difficulty eating or feeling full quickly
- Urinary symptoms (urgency or frequency)
Learn more at one of the following: http://www.tealtoes.org/symptoms or http://www.ovationsforthecure.org/aware/aware.php
3. Getting a tan
From an early age, Sarah loved the sun. She loved the beach. Loved the pool. Loved being in her bikini. She called this her “happy place.” And she was the sun goddess – flipping regularly and adjusting straps so not have an uneven tan. When young – before the sunscreen craze – she always had the perfect tan during the summer. More recently, she tanned just enough – but careful about burns. And of course, making sure to get a good dose of Vitamin D.
4. Her daily Diet Coke
Sarah’s favorite drink. Loved it cold. Some said she shouldn’t drink it for a variety of reasons. Her response, “Damn it! If I’m going to cut out everything else “bad” for me, I have to have at least one vice. And so she did.
5. Global Warming
One of Sarah’s many sarcastic comments a few months ago while discussing possible directions for this post: “Since I’m probably going to Hell anyway, global warming doesn’t sound so bad.” Sarah cared a great deal about the environment and global warming. She worried about the future and what will be left for our kids. At least she doesn’t have to worry about it.
6. Wrinkles
Have you seen what the celebrities are doing to themselves these days? Botox and all sorts of other weird things. Sarah was not keen of the idea of wrinkles, but I think she would have taking them, and worn them with pride.
7. Finding the perfect outfit
Being the fashionista she was, Sarah always cared about how she looked. She even dressed up for Chemo. And why not? It made her feel good. I have to wonder what the fashion is in Heaven these days. If togas are in vogue, I’m sure she’ll be sorely disappointed (she already did that in college).
8. Being cold
Sarah was ALWAYS cold. Well, except in the middle of the summer, or on the beach in the Caribbean. But, there was a silver lining. She used to say, in stark contract to her chili side, I was more like a furnace. And this called for lots of snuggling. We kind of balanced each other out – keeping just the right warm.
9. Nap time
The afternoon nap was a cherished time. When we were younger, both working full time, Sarah enjoyed them on weekends. When she began working at home, afternoon naps were an enjoyable part of her day. After having kids, almost essential.
Then, cancer came. Naps were no longer just a “nice” part of the day, they were a necessity. And Sarah did worry about not getting enough. If the kids were anxious and made too much noise, or the dog was being a pain – sleep didn’t happen. If I called from the car on my way home and got a short answer, I knew her sleep had been restless.
But now, I’m sure she’s resting when she wants to, on her favorite beach. It’s warm. There’s a nice breeze. She’s got a great tan. Eyes closed. Sweet dreams dancing in her head.
10. A replacement
Sarah often talked about my “next wife” and how I should find someone just right. She even wanted to help. But, I’m glad this is something she won’t be worrying about. I’m not. If it’s meant to be, I’m sure it’ll happen. If not, that’s fine too. When I met Sarah, I knew she was “the one” just three days after meeting her. And while our relationship was not always perfect (who’s is?), I’d take our 18 years together and enjoy them again in a heartbeat.
PS. If and when I do find someone, there is no possibility of a replacement. Sarah will always be one of a kind.
11. Her three boys
She worried, and she didn’t. She knew we were well prepared and have a great support system. I remember the first time I heard her say something about a support system. It was before our oldest son was born. She wanted to stay on the East Coast because it was close to her family, her support system. This was a foreign term to me at the time, but have grown to love it and all that it means. Our friends and family are truly amazing. I know Sarah is not worried at all.
12. Dust bunnies
There are many parts of life that are just that, life. Dust bunnies and all. So, stop worrying. Make sure you live each day. Take some time to enjoy the little things – and the big things, too.
We miss you Sarah. Thank you for helping us see and know what is important in life.
Love,
- Mr. Wonderful
Oxygen of Life
When “R2D2″ entered Casa Carcinista earlier this year to become a semi-permanent resident, oxygen entered our thoughts in different ways.
For the kids, it was an omnipresent-shiny-tin-can with a funny, 50-foot hose that was stuck up mom’s nose. Sarah’s Star Wars analogy helped them connect with it, and then mostly ignore it. An obstacle at times, the hose became something to trip over – or NOT – as doing so could evoke the wrath of Mommy. Sarah often joked about it with them, helping poke fun at the situation. The boys thought it comical to say “Mommy’s a hoser” or “Mommy, go stick a rubber hose up your nose.” Their laughter always brightened the room.
For me, it was scary. Like a stranger invading our home. An odd, noiseless, motionless machine with a coil of clear hose I could follow, like bread crumbs, to find my wife. Of course, R2D2 wasn’t the invader – just a shiny metal reminder of the real intruder that relentlessly conspired against our now fallen hero.
Ironically, my life has been riddled with oxygen woes as I’ve had asthma since I was 8. Hospitalized twice as a child, I experienced the terror, frustration and difficult struggle of breathing shallow, constricted breaths. But now, as an accomplished athlete with breathing under control, it was incredibly hard to see my dearest friend struggle.
For our hero, The Carcinista, oxygen simply meant: Energy. Function. LIFE. I believe she thought about this often, realizing the significance of the oxygen we all breathe every day. And thus, before she died, she asked me to tell this story about her “oxygen of life.”
On Thursday, April 28, 2011, Sarah put on her beautiful new party dress, ready for a night we had anticipated for more than a month. Our friends, A + S arrived. We loaded three portable oxygen tanks (not taking any chances) and were off to the Colonial Theatre in Boston to spend the evening in the presence of Harry Connick, Jr.
Over the years, Harry’s music had provided a consistent theme in our lives. It began with the first mixed tape Sarah sent me back in 1993. Then at our wedding, we danced a choreographed foxtrot to “She belongs to me.” Toward the end of the 90′s we enjoyed seeing him in concert. Seeing him again in April was special.
Throughout the concert, while Sarah breathed from her oxygen tank, she experienced another “oxygen” as she called it. She said, “music is the oxygen of life for the musician.” Sarah was a talented singer in high school, traveling with her a cappella group – and I suspect she had experienced this feeling even then.
But, this night in April was over-the-top. Harry was on his game; he even remarked, “Y’all are lucky you’re here tonight. You see, I’m feeling really good tonight. And if there was a night I was going to ‘win’ this week, tonight’s the night.” He was playing five shows that week, ours was the third. Maybe he says this every night? Not sure. But, he (and we) definitely “won” that night.
During the show, there was a series of deeply collaborative musical conversations that carried from one instrument to the next. At one point, Harry abandoned the piano, to take in a trombone solo by Lucien Barbarin. As Lucien jammed, Harry began to tap a beat. Then stomp. Then got down on his knees, slapping and sliding his hands and wrists on the floor. The microphone captured the simple, beautiful rhythmic beats as he and Lucien carried on this intimate, delicious conversation. Music flowing, exuding this “oxygen” Sarah described. A musical story was unfolding, conjuring the struggle of the life of the New Orleans musician. Music in their soul. Music as life. Music as the oxygen of their lives. If the rest of the concert could have been the main course, this would have been the dessert to beat all desserts.
After the show, Sarah and I remained in our seats, allowing the majority of the audience to leave. The 20 or so who had “after show” passes were guided to a room. We found an armchair in the corner for Sarah to sit comfortably. A few minutes later, Harry entered the room. Sarah gasped. “Quick, take some photos!” she said.
A life-long dream. A man she had admired for his musical and acting talents, comedic abilities, humanitarianism and more, was no longer on stage, but right there in front of us only a few feet away. Ultimately, Sarah just wanted to have a conversation. To know what it was like to talk for a few minutes about something that mattered to them both.
Harry made his way around the room, talking to one or two at a time. Posing for photos. Signing programs.
Sarah was patient, but anxious.
After ten or fifteen minutes, Harry came to us, and lived up to all of Sarah’s (and my) hopes. He was a perfect gentleman, remaining focused on Sarah the entire time we talked. Sarah ask a few questions and discussed, quickly, her idea about oxygen and music and their importance in life. Harry seemed to pick up what she was saying, and liked the analogy.
She was smitten. I was happy. At this point in her life, physical gifts meant nothing, but this was a gift that meant so much. An amazing night together. And she was able to experience, and cherish what she dubbed “a real LIFE moment.”
We went to bed that night, holding hands as we always did. Both happy. Full of love. We didn’t realize it at the time, but this was our last date. I look back now and just think, wow!
If you have the opportunity to see Harry Connick, Jr. in concert, Sarah would have said, “Do it!” If you don’t, you might still take a moment and listen to a song or two. While you listen, try to take it in. Feel the music in your soul. Breathe the oxygen. Enjoy.
-Mr. Wonderful
Am I The Only Cancer Patient In A Hurry?
WARNING: The following blog post contains a fair amount of selfish kvetching.
Last Friday morning, I had a CT scan scheduled for 12:00, which meant I needed to arrive for my delicious contrast (don’t forget to ask for Gastrografin in Crystal Light instead of the thick banana shake!) at 11:00. Now, as frequent readers will surely recognize, this runs into my inviolate naptime of 12:00, which allows me to get up at 2:35, get a parking place in the pickup line, and get my kids when they’re sprung at 3:00.
In the spirit of taking the bull by the horns, I left home at 9:45, which would normally get me to The Cancer Factory by 10:30 – nice and early, in hopes of pushing the whole process forward a little and getting me home for some vestige of my dear, sweet slumber. (It didn’t help that the cat was snoring peacefully under her paw and the furry nap blanket when I left.) Unfortunately, the universe had other plans.
Traffic was a nightmare. Pursuant to our drubbing of snow in the recent weeks, there is nowhere to put it, any of it. Thus people pulling off the interstate were unable to find parking places, meaning surface streets were jammed. As a result, the interstate was jammed, too. FOR EIGHTEEN MILES. So my quick little jaunt in town got me to the radiology department promptly five minutes late for my 11:00 appt. Thus I started my contrast drink at 11:15, and didn’t get my scan until 12:30.
While I sat and sat and sat and sat waiting for my scan, I couldn’t help but notice that not only did everyone else in the waiting room have a friend with them, but they were all placid and peaceful and walking slowly. I, on the other hand, was tapping my foot, looking impatiently down the hall, and checking the time repeatedly (why? So someone would notice and move me up the list? Bitch).
I was starving (and fuming about how I wouldn’t get home until 1:30) by the time I left, but as they’ve recently opened the new treatment building here at TCF, the cafeteria had moved there and it was too far to go for food; I’d have to wait until I got home.
And the people in front of me as I was leaving the building were walking too slowly. And the nice attendant who showed me how to use the new parking pay-station was helpful but clearly not going anywhere. Neither were the parking attendants who made me park FIVE floors underground, even though there were plenty of empty spaces above that. Neither were all the twits who were obviously out for a lunchtime scenic drive as I was trying to get back to the highway.
I know that most cancer patients tend to be older people, often retired, and that they have nothing to do that day but their appointments and possibly some liver ‘n’ onions at the Early Bird Special. I know that cancer patients, whatever their age, are worn-down and tired beyond comprehension. I know it’s uncommon to be a five-year cancer warrior who has to pick up her elementary school kids but sneak home for a nap first. I know that I’ve had a bit of a speed-demon issue (stop laughing) since I first learned how to drive. But seriously, I don’t have time to waste in traffic anymore! I can’t shuffle slowly into the elevator and whistle cheerfully while it hits every. floor. on. the. way. down. My life is SHORT, people, and I think I oughta get a special sticker or a dome light or something, at least a special parking place, to indicate that while I am a cancer patient, I’m also BUSY, and way too cute to be stuck in this hospital any longer.
At least I had a good excuse all lined up for the statie who never pulled me over: CT contrast creates a vigorous urge to be near your home plumbing. NOW.
****************************************************************************
Oh, the scan results? STABLE DISEASE. A little fluid around my left lung, but only 10% tumor growth since 12/15. I’ll see a thoracic surgeon in the next 10 days Thursday to see about tapping the fluid, but it appears that the drug is doing SOMETHING. I’ll take it.
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.
Let’s Be Honest
I’ve been avoiding writing this post for three or four weeks now because I know no one wants to read it. (No, I’m not dying. My CA-125 seems to be responding to the new chemo, although I have yet to feel any practical benefits.)
But things at the ol’ Casa Carcinista are, well, different since I got back from Colorado.
Sure, there’s the coughing and wheezing, the resting after a flight of stairs. The utter lack of an exercise routine. But I’m talking about more meta-changes.
For the past four-and-a-half years, we’ve been sailing along through open seas, scanning the horizon with our telescopes, peering from the crow’s nest at the edge of the world, looking for signs of what’s to come. For that time, there’s been no sign of anything, just flat horizon. Some days we’ve had calm seas, and picnics on the deck; other days have been stormy and I’ve stayed below decks. We’ve just kept sailing, waiting and watching.
Now, there’s land on the horizon. Distant, hazy, indistinct, but it’s there. And that’s where we’re sailing. Don’t know how long it’s going to take us to get there, nor whether we’ll change course and sail somewhere else first, but there’s no doubt of my destination.
I think what triggered this all was the realization, in Estes Park, that I was not well. For the first time, really, since forever, I was sick and not getting better. There were things that I just couldn’t do because of cancer, and the likelihood that I ever would be able to do them was small and shrinking. Even during my IP chemo routine in 2006 (the energy nadir of my life), I was able to drag myself to my best friend’s wedding as MOH and even threw down a little swing with my sweetie. Sure, I paid for it for days, but it was a hoot, and I got better. I’m still waiting to feel as well as I did before FD. (Nothing personal, FD – I still love you.)
Strangely, I’ve found these recent changes in my life almost comforting. Where the null-sum of cancer is undoubtedly the waiting, the uncertainty that comes while a surgery date approaches, or while you’re twiddling your thumbs until the scan results come back, any kind of certainty in this free-for-all can be the equivalent of a neatly solved equation, exhaling a long-held breath. As our therapist reminded us this morning, we’ve entered the last healthy step of the stages of grief: acceptance. Not that my demise is imminent, but that it’s out there, on the horizon, whether we’re sailing there directly or around the Horn first. Can you imagine setting out on a journey that will last the rest of your life and not knowing where you’re going or when you’ll get there? (And forget about knowing what to pack.) You see my point.
Even more strangely, a field of calm seems to have settled over Casa Carcinista. With this acceptance has come relinquishing of closely-held argument positions, reductions in conflicts, a willingness to compromise and see the other guy’s point of view. The little brown house is full to bursting with love. Mr. W and I are more likely than we used to be to drop what we’re doing and have a hug, or sit at the table after the boys are excused and just talk quietly about our day. We listen more closely when our kids stop us to talk. We are always available for snuggles. We are focusing on the stuff that really matters – building and maintaining healthy relationships, following family traditions, spending time together – and, for the most part, filtering out the dross.
So no, since you asked, I’m not scared. There are still plenty of things I’m pissed off about, and for damned sure I’m not anywhere near finished fighting this battle. But the cloud of acceptance and love that has descended over Casa Carcinista has made us better people, and I wouldn’t trade that for a house at the beach.
And while we are speaking of beaches... here's my favorite.
Photo courtesy Mr. Wonderful.
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October is Cancer Awareness Month – Pass it On!
Awesome Ann from “Breast Cancer? But Doctor…I hate pink!” has a new campaign – check out her amazingly generous idea, and spread the word…
Wouldn’t it be fantastic to have teal and pink ribbons twined together next October? Or rainbows? The internet is a powerful place.
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.
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.
