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…
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
A Hundred Gs, Part III
(A Hundred Gs, Part II; A Hundred Gs, Part I)
Last week when I met with my therapist, I landed on a theme that keeps coming up for me:
GUILT.
I feel guilty that I’m putting my family and friends through the stress of having to deal with my illness. I feel guilty when my mom drops everything and comes to town to run my life for a few days when I’m having tough treatments or procedures. I feel guilty asking people to stop at the store for me because I know how busy everyone is already, without having to do my stuff, too. I feel guilty when my husband gets home from a busy day at work and then cleans up the kitchen and does two loads of laundry while writing business emails and presentations and I sit on the couch watching Hoarders. (Those people are nuts — look how normal my life is by comparison!)
I know, I know. It’s ridiculous. There’s nothing I did to bring on this disease or its side-effects; guilt is useless. My life “is what it is”, and everyone does what they need to do to live with it and help us all get through it. No one feels that I’m taking advantage of them, or being lazy so I can lie around with the cat and nap all day. Why am I so wrapped up in the guilt?
I’ll break it down a little: I feel guilty because I feel like I’m not pulling my weight. I feel guilty that my disease is making other people make changes in their lives that, if I weren’t sick, they wouldn’t have to make. I feel guilty when, for example, they shower me with Christmas cards and mad money, because “normal” people don’t have that happen to them, and why should I deserve it any more than any other stay-at-home Mom who’s working part-time and keeping a household running? (Which I’m not even really doing much anymore.)
And (here’s the really ugly part) I feel guilty that my husband and kids are going to have to deal with life after me. Not this month, hopefully not for a few more years, but they WILL have to deal with it. And I know they’re resilient, and we’ve laid good groundwork for sharing emotions and feeling strong and loving themselves and coping with bad stuff, but every time I think about “my mom/wife died of cancer” it makes me crazy. Like, life is hard enough to be a kid/tween/teen without that baggage added to your cart. (At least they’ll have something to write about for their college application essays.)
What’s the solution? I know (and hear from others repeatedly) that my guilt is wasted. No one places any of this responsibility on my shoulders. No one thinks I’m being a manipulative slug. And life is like this: just when you think you’ve got everything under control, something goes all catty-wumpus and you have to readjust. Do I just “get over it”? But I’m a mom, guilt is my JOB.
I think it has to go back to my last post: change the guilt to GRATITUDE. Gratitude that I’m still here, despite the odds. Gratitude that I have such a supportive and energetic family. Gratitude that my friends aren’t sick of hearing about Sarah’s Cancer after nearly five years. Gratitude that I still have such a good relationship with my mother that we don’t kill each other after 48 hours (and Mr. W does, too!). Gratitude that we have thoughtful neighbors with snowplows and -blowers. Gratitude that I can still put on every stitch of clothing that I own and take the dog for a walk in the freezing, snowy, beautiful woods. Gratitude that I live in Boston and have access to the most cutting-edge treatments that have been saving my life for months now. (I’m such a proponent of dump-anything-that-is-a-waste-of-energy (i.e., “Why ME????”) that this should be easy.)
Gratitude that anyone out there is still listening!
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.
Hermit Crab
I seem to have dropped off the face of the earth, rants about pinknausea notwithstanding. I’ve been trying to figure out why I don’t feel like talking right now, and it seems to come down to chemo. (Doesn’t it always?)
Starting actual chemo again (vs. a clinical trial or biologic or something) threw me for a loop. Apparently I’ve blacked out how crummy I feel after infusions, because when I collapsed into bed at 5:30 on day 3 of the last cycle, I was surprised. Mr. Wonderful said, “Don’t you remember? This is usually the time you start feeling like crap,” but I had forgotten it. Like how you swear immediately after giving birth that you will never, ever, ever do that again, then twelve months later you’re all, “Let’s have another one!”
So I spent day 4 and 5 in bed, me and the cat and the Compazine, and by the end of the weekend I started to feel like myself again. But apparently aging your body forty years in four years has some drawbacks, and I no longer rebound like I did in 2006. I’ve been having trouble just getting out from under the coughing courtesy of Estes Park’s elevation, and still haven’t resumed my exercise schedule. My lungs don’t like it, not one little bit – not even climbing the stairs, and last night Mr. W and I had a giggle at me huffing and puffing after pulling off a tight long-sleeved t-shirt.
Now I’m at The Cancer Factory for Cycle 2, and anticipating another week of feeling lousy. But why that has to send me into hiding for the next two weeks as well, I can’t figure out. I’ve turned into a terrible phone friend, forgetting to return messages and schedule dates. Some days I just drift along until it’s time to get into bed again, and that’s about all I can handle. But other days I’m doing my little suburban-mommy thing, driving and shopping and cooking and all, yet I still can’t manage to get my head out of my domestic bubble.
So I guess this column is a sort of apology, to those I owe phone calls to, or to those with whom I made tentative plans and then never followed up. It’s not you, it’s me. It’s taken me two years of therapy to be able to accept these words and feel comfortable saying them: I’m doing the best I can.
Photo courtesy here.
Storming The Castle
Despite my facade of bravado the night before, I woke on Thursday nervous as hell. Picture it: a woman who, regardless of recent fitness, has a lifetime history of athletic underachievement, a recent history of daily two-hour midday naps, and a bad case of altitude sickness (not to mention stage IV lung mets) spending six hours climbing a big rock and then rappelling down it again. Teamwork and awesome support notwithstanding, the potential for failure was pretty high. But then again, that’s what First Descents is all about, right? Pushing past your fears, self-imposed mental and physical limits, and getting on top of the rock.
Everyone was pretty jacked up by the time we left the lodge. The plan was to revisit the big thumb we had climbed on Tuesday, just outside of Estes Park, but when we stopped by Mary’s Lake to throw in rocks covered with our inhibitions and self-criticisms, the horizontal rain and strong winds threw a wrench in that plan. Flexibility and going-with-the-flow might be the secondary mottoes of FD staffers and CMS guides: within minutes, a new plan was formed, and we took off for the Boulder area and Castle Rock. The hour-plus drive was beautiful, and gave me a chance not only to admire more of the amazing mountain scenery but to psych myself up for the challenge that was looming over my head like a cliff. I had gotten over the whole being-carried-up-the-approach thing; now I had to trust myself, which seemed significantly harder.
Down a winding valley road just outside of Nederland, Castle Rock appeared around a corner and everyone gaped. Three hundred feet of lumpy granite rising into the air like a tower; a creek runs around one side and the road around another. It looked as if it had been set down inside a bowl, with the hills curving around it – maybe that would cut down on the wind? Whatever, it was tall, and we had to climb up it.
The campers split into two groups: the more expert climbers (Alabama, Psych, Foodie, Sprouts, DoBo, Fluff) and the less expert climbers (Spike, Clover, Milf, Caribou, Wiki, Kale, and me). Guides were everywhere, looking very businesslike, draped with hundreds of feet of rope and dozens of carabiners, talking intensely in hushed groups and planning like generals. We scattered into the bushes for last-minute bathroom breaks, and I noticed dusty chalk prints in the cracks up the steepest southern face of the Rock. Clearly, it was a top-notch climbing spot; I just hoped we’d have slightly larger handholds.
And in came the Sherpa. Nicknamed Luddite, I had gone all jittery-schoolgirl when he’d introduced himself at breakfast: 6′ 3″, strawberry blonde, broad shoulders. Now, with a coil of rope split over each of his shoulders, he was positively psyched about practicing carrying me up the approach – whether his insistence that I was doing him a favor was just blowing sunshine or actual fact I’ll never know, but who the hell cares. Check out the photos:
It was rough, I tell you, rough. His shoulders were so broad it was hard to get my arms around them. Grinning like an idiot the whole ride. You see I needed the team tiara to really polish off the effect.
Away we went, leading the north-side group like the Pied Piper. Low branches were a bit of a hazard, but fortunately the approach only took about five minutes, as opposed to the twenty-five minutes of the other rock we had planned to climb. I didn’t have long to feel guilty.
By the time we got started actually climbing, it was nearly noon. Good news: lunchtime! Warm sunshine! Bad news: naptime was approaching like a dive-bomber. Sometimes I got frustrated at the hurry-up-and-wait nature of it, each of us climbing in pairs up the pitches, but the rest time while we waited for the team to reassemble gave us time to rest and eat and drink. The guides were amazing – the spaghetti pile of two-hundred-foot ropes, carabiners, and climbers they had to belay and keep track of was staggering. There wasn’t much conversation with them, although they did pause for an occasional smile and a contribution to the ongoing “If…” book discussion. Special shout-out to Spare Parts, who worked the belay like a machine all day long.
- That’s Li’l Bits – and 40 lbs. of gear.
Each pitch in itself wasn’t that hard for me. The irony of the whole day is that I actually found myself liking climbing. It’s like putting together a puzzle: a hold for the left hand here, a step for the right foot there, and hoist! Now a right handhold, a left foothold…no? Can I brace with my thigh? Very rewarding and satisfying to the female tetris-loving brain, like watching a needlepoint project or a jigsaw puzzle turn into a whole image from the teensy mosaic pieces. There were moments where I got frustrated because there wasn’t an easy solution, but the cheering from the teammates and occasional coaching from the guides helped my confidence enough that the pieces fell into place, and I found myself flopping over the top ledge like an exhausted swimmer out of the pool.
Second-to-the-top pitch. Sherpas don't get cold ankles, apparently.
After about stage three, though, I was done. No, really. My legs were like Jell-O, my arms too tired to lift over my head. I had eaten good complex carbs and drunk plenty of Gatorade, but the burst of renewed energy was not coming. I think my body doesn’t do that anymore. But no sherpa was going to haul me up the rock. And there was no bathroom at the summit. So this is where I usually fall flat – I’m really tired, it’s time for a nap, I can’t do any more today, I’ll be in my office. Take me home, put me to bed, see you later. This day, from somewhere, I had to find the energy to keep climbing.
I just didn’t think about it, any of it. Not about how tired I was, not about how crappy my lungs felt, not about how tired I was of being cold and clinging to a rock. Not about how far my life had come from what I’d imagined it would be, nor how pissed I was at that. I just climbed. Waited ’til it was my turn, and climbed. And then I was up.
Once we were all there, it was strange – we were all jubilant, incredulous at the magnitude of our accomplishment, but exhausted. No one seemed to want to leave, whether we were all too tired to move or just didn’t want it to end. Photos were taken, jokes were told, and then it was time to go.
Rappelling was less terrifying to me than belaying; I guess I’m a control freak, because once I was the one holding the reins (so to speak) letting me down the cliff everything was fine. It doesn’t make stepping backwards off a perfectly good 250-foot cliff any easier, though, even when I’m well rested. Which I was not. And yet, I think the exhaustion quieted the jitters: by the time my jelly-legs had gotten me to the brink, and Spare Parts had hooked my harness to the ropes, I was simply so eager to be finished that I cooked over the edge and started bouncing my way to the ground.
After what felt like ten minutes, but was probably only about two, I stopped for a rest. And looked around me. The sun was setting, the shadow climbing the wall of the bowl around me. The sky was blue. No one was asking me for anything. I had gotten up and over that big friggin’ rock under (mostly) my own power, despite my misgivings. Holy crap. Then I made a mistake – I looked down. People are very tiny from that far up, as are minivans with reclining front seats. Time to get cracking.
Shoulders get sore passing handfuls of rope to yourself over and over again. Switching hands wasn’t an option, though, so I rested a couple of times. I was really cognizant of being the third one down, though, and that there were about twenty people up top who needed to follow me down. Past the hundred-foot pine tree, over the ledge, run out of footholds and swing precariously, and then hands on my waist helping me down. Done. I could barely unhook my climbing harness and stagger to the van. Seat down, feet up, pass out.
And not be able to fall asleep. As I lay there staring at the bushes outside the window, so many things ran through my head. First was, “Why the hell did I do this? I can’t believe I signed up for this nightmare. I’m so tired I’m going to die.” Next came the cascade of memories from the day: rooting for reluctant climbers; Slash’s ridiculous sing-alongs; the sunshine on all of us at the top. As I heard subsequent rappellers finishing their descents and cheering for each other in a mob, I was overcome with jealousy: at their energy levels; at their ability to stand up after that day; at the fact that some of them were over their disease; at the fact that I wanted to plan to do First Descents again and might not get the chance to. Tears of exhaustion. Frustration. Nap.
Spare Parts opened the tailgate some time later to start loading in equipment, and threw on some tunes for the assembled cheering squad – the clock said 6:45. No wonder I was zonked. It took another forty-five minutes before everyone was down and loaded. I was so excited to be driving home I could hardly stand it. Nap. Forget dinner – to bed, to bed. My pre-noon flight the next morning would probably require an early wake-up call, so I was eager as hell to check out.
Ha ha. It seems that other members of our team were HUNGRY. We stopped in Nederland at a Nepalese restaurant called Kathmandu for dinner. I was nearly in tears again at the thought of having to get up and walk into the restaurant and make conversation for an hour. Oh, and it’s buffet. Now I have to balance a plate, stand up and make conversation. Then it came to me, like a message from heaven: I. can. order. a. diet. Coke.
Caffeine, food, and chai actually dragged me out of my funk, and I completed a couple of sentences at the table. But by 8:30 I was practically herding people out the door to the vans. Slash said that once we got back to the lodge, we still had a Campfire meeting to get through, plus the awesome slideshow from the week. Bedtime? Maybe midnight.
I did finally fall asleep in the van, but it took everything I had left to pry my bod out of bed, wrap myself in a sleeping bag and shuffle outside for the Campfire. I won’t share everyone’s secrets, but it was clear ground had been broken, lifetime friendships made, personal limitations smashed.
For me, my contribution to Campfire was that the day’s heroic achievements had been so huge there was no way I could summarize them without some sleep. I said that when I woke up on Tuesday, I’d probably blow my own mind at how huge the day had been. I was seriously so drained, and the magnitude of our journey so epic, that to this day I’m still trying to wrap my head around it.
What I know for sure is that the next morning, when I had to say goodbye, it was like cutting off my arm. First Descents felt like an entire year of college, with its friendships, shared in-jokes, and constant togetherness, crammed into five days. I was so tired I thought I wouldn’t make it through security (thank heaven for first class lines!), staggered to a kiosk for a fatty bagel-egg-bacon-cheese, collapsed at the gate and burst into tears. How does one come down from a high like FD and return to the real world? The regular real world would have been hard enough, but I had to psych myself up for chemo in two days. I needed some motivation.
Memories.
Day 1: What have we signed up for?
Day 2: Post-climb chillin.
Sprouts, Spike, and Shotgun revel in the view from the top.
Day 3 mountain hike, and sweet Clover.
First Descents #53 Colorado Climbing camp, victorious.
I’ll be back.
Photos courtesy Kale, Clover, Spike, DoBo, Wiki, Wildflower, and Garçon. I forgot to take any.
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.
Non-Cancer-Patients Have Feelings, Too
Before I was The Carcinista, I was known as the Fashion Nazi. Working hard at building a style consulting business, I was the go-to gal for advice of all sorts (“I have this wedding to go to…” or “Gee, how about we go to the mall this weekend? I’m looking for boots…”) and quite popular when friends or acquaintances wondered if this outfit made them look fat/out of date/mutton-dressed-as-lamb. Clients streamlined their wardrobes and lost fifteen visual pounds/years. Fashion review columns flowed from my fingertips. Withering red-carpet reviews became my calling card.
The downside, apart from wasting countless hours lost in W and on style.com, was that in social situations, good friends and new acquaintances alike were constantly apologizing for what they were wearing. “Gee, Kate, if you’d told me Sarah was coming to the party, I would have dressed up!” I tried to explain that unless they were my clients, their appearance was their own business, and it didn’t matter to me what they wore, but I guess Clinton and Stacy’s reputations preceded me. No matter how much I reassured them, there were always sheepish mea culpas for all-black outfits, comfortable shoes, or un-made-up faces.
Now that my public persona has shifted a bit, although I’m still the sassy style arbitrix I always was (with occasional forays into the yoga-pants-and-oversized-sweater look on schlumpy days), I’m still getting bowing and scraping from people. Only this time, they’re apologizing because I have cancer. Everyone has gripes. Everyone has a lousy day, a sore muscle, a bad cold. But no one feels like they can tell me about it, because my cancer trumps any other life gripe.
Thanks, everyone, I appreciate your…what, grasp of reality? But it’s all relative. My reality is mine, and your reality is yours, and if you’re sore from shoveling snow, it’s okay to complain about it. I promise I’m not thinking, “Wow, what a selfish bitch she is, grousing about sitting in traffic; I have CANCER!” I actually got back in contact with a dear friend after a too-long hiatus, and she told me she hadn’t called in over a year because she’d been having confusing medical problems but they didn’t hold a candle to mine, and she hadn’t wanted to complain. Are you kidding me?
Look, kids, you love me, scars and all. And I love you, baggy sweatshirts and all. And I want to know what’s going on in your lives because I care about you and how you feel. So complain about the flunky at Starbucks who screwed up your chai. Cancel our playdate because you have a headache. There’s no measuring stick for a crappy day.
Just don’t tell anyone I dress you if you wear that out in public.
More Cancer Karma
Once I had this blog up and running, I spent some time fleshing out the peripherals and racking up a pretty sweet blogroll. There are quite a few sassy cancer babes out there and some of them are terrific writers, too. It’s startling/depressing/comforting to discover that one or two of them seem to be living lives that are parallel to my own: young kids, solid marriage, suburban poster children, fighting like hell, still putting on makeup. Naming their wigs.
I don’t want to seem like I’m shamelessly trolling for readership, but the reason I started blogging in the first place (aside from a little ego-stroking) was to link up fierce cancer babes all over and build some support, outside of the established cancer communities, for keeping sane and surviving with your personality and sense of humor in tact. So I started dropping some comments on the blogs that really hit home – experiences I could relate to, really poignantly aching displays of honesty, hysterical tales of mishaps and chemo-induced forgetfulness. And one of the babes who read my comments and wrote back was My Name Is Not Cancer Girl, who’s knocking BC on its butt in the ATL while taking care of her family. And naming her wig. Now we read each other’s blogs and offer support and wiseacre commentary, just like I had hoped.
Last weekend I got an email from an old school friend (thank you, facebook) who wanted to introduce to me a dear friend of hers who’s fighting cancer, with a new bone metastasis, in Atlanta. I wrote back to say that I’m always happy (well, you know what I mean) to meet a new cancer chick and share tips, gripes, horror stories, etc. As I was writing the body of the email, I had a little tickle in the back of my brain… “Is there any chance she blogs? I asked. Bet you can’t guess the answer.
Karma? Coincidence? What do you think?
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
The Carcinista 