One Year

May 3, 2012 at 12:06 AM (Cancer, Energy, Faith, Family, kids, Real Life, Silver Lining, Zen) (, , , , , , )

May 1, 2011, The Feather Family

Today marked the last day of the year. One year of time that has been spent on an incredible journey of self-reflection. One year since Sarah, The Carcinista, died.

In many ways, this year has been amazing. Our boys and I have learned some wonderful life skills. Not just for coping with the hard things, but for really building a good life in a new way. Many things have remained the same by design. But we have also set out to create a life that works for the three of us. A life that (I believe) Sarah would be pleased with, and proud of.

We all have come to a place of peace about where she is, and how she is still in our lives. That took time, but maybe less time for us than it could have taken. Sarah gave us all permission to come to peace, and to be able to move forward in a good way. We are embracing that as a family.

May 3, 2012 is not a sad day. At least not any more sad than any other day this week or next week or last week. We’ve come to cherish our memories of Sarah and how we were a family. We talk about Sarah at the dinner table, while driving to school, at bed time. Really, whenever it feels right. I often say to the boys how proud Sarah would be to see them with all they have  accomplished. They like that. And, of course, I tell them how proud I am of them as well.

I asked the boys if they would like to have a special dinner to remember Mommy on the anniversary of her death. They both smiled, and at the exact same time blurted out, “We want ice cream for dinner!”  So, we’re having ice cream. Super Mom is joining us as well. We’ll be spending some special time thinking about Sarah and talking about our wonderful memories. We’ll light some candles in her honor. And, as usual, finish the evening reading some books before the kids go to sleep.

So, if you feel like having a little time to remember our hero. Maybe you, too can eat some ice cream. Light a candle. And settle in to a good book.

Cheers,

Mr. Wonderful

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The End

April 23, 2012 at 10:56 PM (Awareness, Cancer, Energy, Faith, Family, friends, Happy, Karma, kids, Real Life, Silver Lining, Uncategorized, Zen) (, , , , , , , , , , )

Wait, what? The End? What do you mean?

Well, Sarah wanted me to write this. So, I’m writing it.

A year ago, as Sarah was getting ready to say good-bye to our world as we know it, she was coming to terms with what she felt was the most likely afterlife. She had decided that she didn’t really believe in God or heaven. At least not in the way they talk about it in Church. We both used to be more comfortable with something that was closer to “the force” from Star Wars. An energy that bound everything together in a beautiful way.

A friend asked Sarah where she thought she might go after death. On April 27, 2011, Sarah responded with the following:

“I believe that life flows and ebbs and forms beings (trees, fish, dandelions, dung beetles) that get their energy from a giant pool of energy that surrounds everything (don’t ask me to get specific). When a new baby (lion cub, cockroach, seedling) is born, it takes its energy from the same pool, and when it dies, its energy returns to the pool and dissipates into a million(?) (billion?) pieces. I would prefer that our souls get to keep some of their individuality so I can come back and haunt everyone, visit the kids, go places I’d like to see. There are also a great number of people and pets that I need to see when I get there; I’ll be very disappointed if I can’t have lunch with my grandpa sometime! Maybe there’s a special package you can choose when you get there… if it’s merit-based, I certainly won’t win, but I can get a little extra-credit for making people laugh? Even if the jokes were raunchy and politically incorrect?”

Since Sarah died, she has convinced me that while the energy thing might be part of it, she also got the other part of her wish – maybe a bit of heaven on Earth.

Sarah’s nurse called the day after Sarah died, not knowing that she had passed, and asked how she was doing. When I told her she had died, she said, “I had a dream last night and Sarah had taken out her oxygen tube and wasn’t using it. I told her to put it back in so she could breath. But Sarah looked at me and said, Rose, I’m okay.”

We had a birthday party for Sarah in November. 85 people came to the house to remember her and have a nice evening meeting other friends and sharing wonderful stories. The evening was a success and I was happy to get in bed that night. At about 3 AM I woke after an experience that I cannot call a dream. Sarah was there with me before I woke. She was dressed in something resembling a Halloween costume (it was only a few days after Halloween and she loved to dress up). I said to her, “Thank you for coming.”  She looked at me and smiled. There was a very warm sensation between us. She never said anything, but she didn’t have to.

Over the Thanksgiving holiday, our boys, Sarah’s parents, her sister, our nephew and I went to St. John, USVI and took Sarah with us, too. We had a wonderful week there. On Friday morning, we each took a turn spreading her ashes on the beach and in the water at Francis Bay. A place that was dear to Sarah – where she had wanted to be. It was a somber occasion, but one of great relief to us all as well. Sarah was now “home.”

The boys and I returned to St. John for another week this March to spend some time there, just the three of us. We wanted to be close to Sarah and feel her with us. And we did. The weather was perfect. We spent lots of time on the beach, we sailed a few times, we met new friends. It was fantastic. Then on the way home, Sarah spoke to me in a way I could not have ever even made up.

It turns out that Harry Connick, Jr. and his family were on St. John the same week we were there. I didn’t know, but I’m sure Sarah was all over it. When we were leaving to fly back State side, we found out that Harry Connick and his family were on the same flight we were taking back to Newark.

Before I go on, if you have not read the story about Sarah meeting Harry Connick, Jr. on April 28, 2011, then you have to read that first. Otherwise, read on…

The boys and I boarded the plane knowing we had three separate seats around the plane. I had hopes of getting people to move so at least the boys could sit together, but with a full flight I was not feeling very good about it.

Sarah stepped in, and made it all come together.

Seat #1 was in row 7. A nice woman and her 6 year old daughter had an empty seat for my youngest. He was thrilled and very happy to have a playmate for the flight. Of course, my oldest said, “Dad, I want to sit with a kid, too!”

Seat #2 was in row 11. A nice woman and her son with the empty seat next to the window. #2 was happy. So was I. Stress relieved! Now back to my seat.

Seat #3 was in row 29. I arrive at my seat to find an empty row. Oh well. The boys are happy, no sense in dragging them back here. And, I’m sure someone will end up sitting here anyway. I sat and waited.

After the plane was almost full, a man ended up standing next to me. I looked up and it was Harry Connick, Jr. I played it cool, but was in complete shock. He and his younger daughter ended up sitting next to me for the flight.

Harry was really nice. We talked for maybe 15 minutes, but that was all I needed. I really just wanted to be able to thank him for what he had done (unknowingly) for Sarah. He was honored to hear the story and was very thankful.  When we got off the plane, he introduced me to his wife, Jill, and his older daughter as well. To be honest, they all were wonderful and asked about Sarah. It was a very nice experience.

Good Karma? Crazy coincidence? There are chance things that happen in our lives, but I firmly believe that this was Sarah, in a higher power, intervening and saying, “Ed, thank you. I’m doing great. And so are you and the boys.” Funny, now that I think of it, maybe she was also saying “thank you” to Harry at the same time. Two for the price of one. Nice work Sarah.

So, is this “The End”?

No!  The Carcinista is to be continued…

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A Run for Sarah

April 10, 2012 at 10:11 PM (Awareness, Cancer, Energy, Faith, Family, friends, Happy, Karma, kids, Mood, Real Life, Silver Lining, Uncategorized, Zen) (, , , , , , , , , , , , )

On Monday, April 16, 2012, I will run in the Boston Marathon as part of the Dana Farber Marathon Challenge team.

While this will be my third Boston, it will be the first without Sarah cheering me on from the sidelines. I last ran in 2009, and I remember running through Wellesley close to the half-way point, seeing her there with our boys. I yelled out as loud as I could, “I love you, Sarah.” I remember the pride and love I felt as I saw them there together. And I remember my tears, knowing we had a battle ahead of us that was not going to be easy.

As I trained throughout this winter, I’ve thought long and hard about Sarah. I’ve thought of things we used to talk about, or things we did together. The way she used to encourage me. There were so many wonderful things she did for us. An integral part of our family that made us whole.

I’ve also thought of her strength and how she just kept going, on and on with all the surgeries, chemotherapy and trials to see if we could find something that would work. She never gave up. And this is a lesson that I take to heart. She’s with me every day. Every time I go running I find a deep strength knowing she is there.

I made a short film about running and training for Boston over the winter. But, it’s really not about me. It’s about Sarah and all she did for our family. It’s about that amazing strength she gave us.

When I run on Monday, I will be running for Sarah. I will be running for our boys. I will be running for all our friends and family. I will be running for our friends who have died from cancer over the past year. I will be running for our friends who are still fighting and surviving.  And I will be running for a future without cancer. If you would like to support my run, please watch this short film. It’s only 3 minutes long. And if you can make a donation to the innovative research program at Dana Farber, please visit my donation page. 100% of funds raised go directly to cancer research programs.

Lastly, please share this with your friends. Let’s remember Sarah, the Carcinista, as we approach May 3rd.

With love,

Mr. Wonderful

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Transformation, turning points and clarity in life.

September 25, 2011 at 10:12 AM (after chemo, Age, Awareness, Energy, Family, friends, Karma, Real Life, Silver Lining, Treatment, Uncategorized, Zen) (, , , , , , , , , , , , )

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

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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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All You Need Is Love

July 15, 2011 at 2:15 PM (after chemo, Awareness, Energy, Faith, Family, friends, Happy, Karma, kids, Real Life, Silver Lining, Sleep, Zen) (, , , , , , , , , , , , )

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

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Things I don’t have to worry about anymore.

June 9, 2011 at 8:10 AM (Age, Awareness, Energy, Family, friends, Happy, Karma, mommy guilt, Real Life, Silver Lining, Zen) (, , , , , , , , , , , , , )

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

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Oxygen of Life

May 18, 2011 at 11:04 PM (Energy, Happy, Karma, Mood, Real Life, Silver Lining, style, Zen)

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!

The Carcinista meets Harry Connick, Jr.

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

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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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Taking The Reins

April 22, 2011 at 11:21 AM (after chemo, Energy, Family, friends, Palliative Care) (, , , , , , , , )

First, apologies to those of you who were greatly confused by my last post. I lost a few edits in the internets (can’t even blame it on Microsoft!), including the crucial little addition of “Last…” before “…Monday” in the first paragraph. So all of what you read about happened April 11th, not the 18th. Probably the distance from the event helped me look upon it with such a healthy dose of scorn; if it had been this week, my pride might still be wounded.

“So,” you reason, and correctly, “the meeting ‘Thursday’ happened a week ago and change; tell us what happened already!”

The visit itself went very smoothly (although you can bet that SuperMom and I found a wheelchair with a fresh O2 tank right away, and didn’t mess around with using my own portable liquid). If you’re looking for more slapstick fun, you’ll have to check back later and see if I’ve made a fool of myself again. Thursday was quite calm.

I was joined rather quickly by my oncologist, Dr. A, and the Palliative Care/Pain Management specialist, we’ll call him Dr. Feelgood. I asked about other treatment options beyond the Navelbine, and Dr. A mentioned IV Topotecan, which would bring with it the standard side effects of nausea, constipation, diarrhea, and fatigue. I asked about percentage of efficacy, and she told me that there would be a “5-10% chance of any effect” at all on my existing disease, and that “any effect” would mean maybe 1-2 weeks of additional life.

Wow, I thought, doesn’t sound like the teensy weensy percentage of results outweighs the potential of feeling even worse than I do now. What else you got?

“What else is there?” I asked, in proper English.

She said I could go on weekly Taxol, although as we all know and love, the #1 side effect of Taxol is baldness, and I’m sorry, but I promised myself a year ago that I wouldn’t go out without hair. Plus, there would be only the same very slight percentage chance of there being any effectiveness at all, and that would only extend my life by a week or two, all while lying in bed feeling crappy.

So with firm conviction, I said, “Enough. I don’t want any more treatment. If something miraculous-sounding comes up in the Clinical Trials department in the next few weeks and I’m still well enough to get accepted, I’d love to hear about new options, but these choices are not good for me. I’m declining any more treatment.”

Mostly, what I was thinking was that my tolerance levels are pretty low already; if I can barely handle my kids being around me when they get wild today, how will that go when I’m feeling sick and staying in bed because of chemo? I’ll be a royal bitch, that’s how that will go. I’ll have to ask someone to keep them away from me, and that’s NOT how I’m going out.

The percentage of happy is more important to me now than the number of days. Quality over quantity.

Dr. A cried. (!) Mom cried. I cried. Dr. Feelgood laid his therapist “I hear you taking control of your life and it’s a good decision that’s right for you” vibe all over us. There was lots of hugging. Then the fabulous N.P. came in and she cried, Mom cried, and I cried all over again. More hugging. Everyone told me how strongly they supported my decision, how they thought it was the right thing to do.

But for possibly the first time ever, I didn’t feel like I needed validation on my decision (no, seriously, ask my mom). I knew I had made the right choice. I’m TIRED. Tired of feeling rotten, of being stuck in the house, of not being able to do anything for anyone but myself (and even then just barely). I’m tired of switching horses mid-stream every six weeks. If there had been ANY response worth a damn from my lung mets since they showed up in 8/09, I might be more interested in fighting a longer battle. But there hasn’t been, not one. And I’m done.

I love how willing everyone is to pitch in, but I know it’s hard on everyone (especially the intimate family who sees me all the time) to have to carry this load. I want to go out in charge of my life, with a little dignity left. Blackmailing friends into coming to visit by making them bring offerings of Starbucks Chai Latte. Being able to sit at the dinner table and make my kids laugh.

So I’ll certainly keep posting, but from here it might take a slightly different direction. And I’m happy to answer any questions you might have – ask away! But I’m already feeling better without chemo on board, so unless you have a hotline to some pretty powerful folks, I’m going to let it ride.

And I’d love to give appreciation to those of you who envisioned me as a pit bull, one who would grasp at any straw to milk every second out of my life, for my kids’ sakes. Turns out what’s best for them is to have their mom AROUND and PARTICIPATING, not hiding inside all summer and watching their birthday parties on video at the end of the day. So I’ll fight while the fighting is good. And then I’m going to have a chocolate milkshake and a really killer nap.

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