The End
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…
A Run for Sarah
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
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
A Hundred Gs, Part I
Alright, stop harassing me, I’m back.
A couple of items before I jump in:
- I don’t know who the 100+ people per day are who have been re-reading my last post over and over for the past month, but thanks. Your dedication is astounding.
- I hate winter.
The past month has been really insane. From the fabulous boots to the non-existent nephrostomy bag to the fact that my trial drug seems to be working. Yes, you heard me, it appears to be working.
I felt like death-warmed-over the week before Christmas, and Mr. W and I were having the tough discussions about what music to play at my memorial service, how pretty his next wife was allowed to be, etc. etc. I had aches and pains, took Dilaudid to get to sleep at night, had trouble with a flight of stairs. I was pretty out of it.
Then all of a sudden, with that fabulous news about my hugely resilient kidneys (and the onset of the action of my new Celexa prescription, coincidentally), things sorta turned around. Okay, I did spend 24 hours in bed with a stomach bug, but I wasn’t huffing the inhaler all the time; I wasn’t taking narcotics to sleep, and my symptoms (full all the time, pain in the cancerous nodes in my neck, groin) seemed to fade away.
Which brings us to the news, delivered last Monday, that my CA-125, previously in the 200s, had dropped to 79. Seventy-nine. Holy crow, is there a light at the end of this tunnel? And even if there isn’t, if the CT scan scheduled for the end of the month shows not stability but merely slowed progression, so what?
That’s right, I’m feeling grateful. It’s taken a long time to get to this point, but if all I get from this clinical trial is an extra two months without symptoms, I’ll take it. It has been an opportunity to feel like myself again — well, the latest incarnation of myself, with two-hour naps and no muscle tone — and to read out loud to my kids without getting winded; to not only have the energy to make dinner but to go to the grocery store and have the presence of mind to think of a recipe to make, collect all the ingredients, then move down the aisle and see another idea pop up. (And to be grateful as well for the freezer full of lovingly prepared casseroles to thaw and bake on the nights when I’m beat.)
And to feel gratitude that my hair is too long and desperately in need of highlights, but sprouting from my very own head.
Without this two months of feeling better, I might have missed this:
The A-man and his post-bar-fight face.
Tomorrow: Part II.
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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Coping Skills
I left a whole bunch of things at home this morning as I rushed out of the house ten minutes behind schedule, and only realized my mistake(s) as I was merging onto the Mass Pike. I called home to ask Mr. Wonderful to email me the shopping list so I could stop on my way home. Being the Mr. W that he is, and since he was coming downtown anyway for a meeting, he offered to bring the other stuff to me at The Cancer Factory. Timing was tricky, as I was running back and forth between two buildings for appointments that couldn’t seem to start on time, but someone smiled on me, and he pulled in just as I was dashing back across the street for my CT scan.
Short story long, he brought me the things I had forgotten, packed in a little reusable bag from lululemon (a store at which I hope to spend a lot on exercise clothing in the future). Printed all over one side of the bag are inspirational quotes, admonishments to carpe diem, etc. One specific line caught my eye: “Life is full of setbacks. Success is determined by how you handle setbacks.”
Particularly poignant this week. Yesterday I cornered a despondent and stomping #1 Son, grouchy because his brother hadn’t wanted to play outside with the dog with him. From somewhere deep within the storage pool of mothering instinct came the line, “You can’t let your happiness depend on the actions of other people. They all have their own thoughts, their own desires, and they can do as they please. If you can’t be happy unless they do exactly as you wish, you’ll always be disappointed. Be happy with your own actions, and let that be enough.” (I have no idea where I got that from, as I can be quite susceptible to the problem at hand myself, but it sure sounded good. I should probably needlepoint it on a pillow.)
It’s been a tough week to be me. Although both kids have been in school five days, for six hours at a stretch, by Tuesday night I had come down with the week-off-the-mystery-drug-fever again, and felt like a sodden lump of sand. A “quick” four-hour trip down here on Wednesday for two types of blood draws and pee-in-a-cup showed no reason why I should have a fever. Nonetheless, by mid-afternoon I’ve been ready for bed, which did not accommodate yesterday’s pot of chicken-noodle soup (I had to do something with Monday’s leftovers) nor the 6-to-7:30 soccer-clinic-on-the-complete-opposite-side-of-town-in-a-downpour-wait-in-the-van nightmare. By 8PM I was fish food.
And as I slumped despondent on the couch with hot tea and layers of wool, watching The Blind Side with the hubs, I was put in mind of something my own mom used to mention (from her infinite pool of mothering instinct). When asked the eternal question, “What do you hope for your children in their lives?”, she never responded the expected, “I just hope that whatever they do, they’re happy;” she always said, “Life is full of times that won’t be happy. I want my kids to be able to cope.”
Which is, I think, what’s been going on here at Carcinista Central. Whatever the cancerverse throws at us, we find a way through it, and most of the time we are actually happy (although some days I just sob on the steering wheel). We lean on each other when we need support, take time away when we need to be alone, and take risks knowing that the family and friends who love us will be there to pick us up if we crash.
I’ve just met with Dr. A, and my CA-125 and CT scan have deteriorated a fair amount from ten days ago. While that’s never good news, at least the results are definitive: I’m going off the study and starting chemo when I get back from First Descents. I am glad that my week in Colorado will be drug-free, but I know I’ll still be a tired mess, push-ups and pull-ups notwithstanding. It’s a program for cancer survivors, after all, even if I am the oldest and illest one there – I’m sure they’ll understand. I’ll nap if I need to, bow out of activities if I must, but I’m going. If they have to shovel me onto the plane in a wheelbarrow, I’m going. Mom taught me that much.
Besides, six hours all by myself in first class? Each way? I wouldn’t pass that up for anything.
Swimmingly
I’m not sure what it is about swimming that appeals to me. Probably not the part where you have to wear a bathing suit, although it’s hard to get a decent tan fully clothed. (That’s a whole ‘nother post, that one.) And it’s probably not the part where you get all wet and your hair goes nuts and your makeup washes off. (Gee, now I sound like a high-maintenance princess.)
I was on the swim team for years. Not fast, usually last. Practice went on forEVer, and you can imagine how appealing that was to the Class Couch Potato. I still wonder whether the only reason I did it was to keep my family from pestering me about never getting any exercise.
But I love to swim. In a lake, in a pool, in a river, in the ocean. The best part is swimming underwater as far as I can, trying to make it to the other end of the pool in one breath. Something about the isolation, the peace of the water bubbling past my ears, the dolphinity of the whole experience really zens me out. The blue of the pool, or the dark coolness of open water.
And then there’s snorkeling. Last week, after absent-mindedly skirting around the reefed edges of the cove beach where we were staying, Mr. Wonderful and I rented sea kayaks (!) and took the boys for an adventure to a small cay about a mile off the shore. When we had beached the boats, the boys and I explored the beach and the Custom House ruins, while Mr. Wonderful explored the apron of coral that wrapped around the south side of the cay. After half an hour in the water, he came ashore, handed me the fins and mask and said, “You won’t believe this backyard treasure.”
Compared to the anemic reef left on the mainland, this was like comparing the zoo to the African veldt. Huge schools of fish, forests of healthy coral, herds of black sea urchins gathered under overhangs. Riotously colored parrotfish crackling nibbles of algae and making sand of old reef. Angelfish the size of manhole covers. And all the while, the gentle sway of the waves and the quiet of my breath in my ears. I was overcome with the simplicity and peace of the scene, the utter irrelevance of humans to the intricate relationships playing out below me.
I stayed in the water until my goosebumps had goosebumps; giving up was almost unbearable, like leaving a loved one for a long journey. I could have gone back in and stayed for days, but we only had the boats for three hours. I didn’t snorkel again during the last three days of the trip – I guess I didn’t want to be disappointed if the next reef didn’t measure up. But the pool opens in two weeks…
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There’s no way to capture an experience like that on film or video, so I’m sorry I can’t share it with you. Do you have a favorite meditative place?
The cay is on the right side of the photo. Best snorkeling ever. Photo courtesy http://www.maho.org.
Get Up Offa That Thing: Exercise Helps Cancer Patients
Don’t hate me because I’m in good shape.
When I was younger, I was a sloth. My mom signed me up for gymnastics classes, diving classes, riding lessons, the local swim team. I didn’t last long in any of them. The problem was, they all involved exercise and effort. I was much more of a sit-down-and-read-a-book kind of girl. Because sports were mandatory at my school, I volunteered to be the goalie for both field hockey and lacrosse, if the coach would let me get out of running laps with the rest of the team. (Hey, if I could stand in one place for the whole game, why did I have to get in shape?) I was even voted “Class Couch Potato” in my senior yearbook.
Then, when I was 21, I met this guy. He never sat still. Rollerblading, cycling, running, hiking, sightseeing… if I wanted to spend time with him, I had to get up. But still it took an engagement ring before I really got serious about working out. (Holy crap, a wedding gown? I better get my rear in gear.)
Fast-forward to the birth of my first son. All of a sudden, working out became a treat (sort of), a ninety-minute period of alone time when I was responsible for no one but myself. And, as any mother, stay-at-home or otherwise, can tell you, we don’t even get that in the loo. If I had to exercise for some peace by myself, I’d do it. (Never mind that it had to be at 5:30 a.m.; that just gave me the excuse to nap when the baby napped.) It turns out I am vainer than I am lazy.
Fast-forward again to my life P.C. (post-cancer). When I recovered from my first surgery, I realized that without all those tumors inside me, I felt better than I had in at least a year. Possibly since before I had had kids. So I kept working out. And during the IP chemo, which I was told came with “crushing fatigue” (boy, did it ever), I kept working out. Some days just a lurch down to the bottom of the hill and back, but I got moving. It helped me to feel in control of my body, in control of my life, in a disease process that is totally out of the patient’s hands in so many ways. It gave me time to think things through while I staggered, and make some personal decisions without interruption. I’m convinced that having a pretty high percentage of muscle mass helped me come through the six rounds of IP cisplatin as strongly as I did.
Once chemo is over, every time, and I start crawling out of the pit, exercise helps me feel like a normal person (at least until I catch sight of my squishy, pale, bald self in the weight room mirror). It helps me get my energy back sooner than I would have just waiting inside my house. It helps me get rid of the carbo-belt that develops around the waistband of chemo patients, thanks to the fabulous anti-emetics available nowadays and the raging cells looking for sugar.
Today, I found a study that shows how cancer patients that get regular exercise have more vigor and less emotional distress than cancer patients who don’t. (Sign up for a free MedScape account to read it – they have great articles.) Which I probably could have told you without the grants and the patients and all that time, but now we have proof.
So my advice for cancer patients: GET UP. Lurch down the hallway and back again. Once you can do that five times, add some stairs. Go for a swim. Walk the dog. Go down to the end of the driveway and get the mail. Once you finish chemo, treat yourself to a gym membership or a daily walk with a friend, and keep moving. The oxygen will help your body recover; the muscles will burn off the spare tire, and the companionship will keep you coming back.
Look, I love an afternoon in a comfy armchair with the cat and a good book as much (and probably more) than the next girl. But it isn’t going to prolong my life the way being in shape will.
Besides, the chair and the cat will still be there in an hour.
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
The Carcinista 