One Year
May 1, 2011, The Feather Family
Today marked the last day of the year. One year of time that has been spent on an incredible journey of self-reflection. One year since Sarah, The Carcinista, died.
In many ways, this year has been amazing. Our boys and I have learned some wonderful life skills. Not just for coping with the hard things, but for really building a good life in a new way. Many things have remained the same by design. But we have also set out to create a life that works for the three of us. A life that (I believe) Sarah would be pleased with, and proud of.
We all have come to a place of peace about where she is, and how she is still in our lives. That took time, but maybe less time for us than it could have taken. Sarah gave us all permission to come to peace, and to be able to move forward in a good way. We are embracing that as a family.
May 3, 2012 is not a sad day. At least not any more sad than any other day this week or next week or last week. We’ve come to cherish our memories of Sarah and how we were a family. We talk about Sarah at the dinner table, while driving to school, at bed time. Really, whenever it feels right. I often say to the boys how proud Sarah would be to see them with all they have accomplished. They like that. And, of course, I tell them how proud I am of them as well.
I asked the boys if they would like to have a special dinner to remember Mommy on the anniversary of her death. They both smiled, and at the exact same time blurted out, “We want ice cream for dinner!” So, we’re having ice cream. Super Mom is joining us as well. We’ll be spending some special time thinking about Sarah and talking about our wonderful memories. We’ll light some candles in her honor. And, as usual, finish the evening reading some books before the kids go to sleep.
So, if you feel like having a little time to remember our hero. Maybe you, too can eat some ice cream. Light a candle. And settle in to a good book.
Cheers,
Mr. Wonderful
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
Ovarian Cancer Awareness Month? Hmmmm….
September is Ovarian Cancer Awareness Month. October, AKA “PinkTober”, is the month we think of Breast Cancer. And, apparently November is Lung Cancer awareness month. December? Not sure, but I’m sure there’s a cancer for that month, too. Don’t you think it’s a little ironic we try to remember different cancers on different months throughout the year?
I do.
On a Thursday in May 2006, Sarah was diagnosed with Ovarian Cancer. She was blown away. SHOCKED! Maybe if we’d paid more attention to Ovarian Cancer Awareness Month she might have checked earlier? Who knows. She used to say that sometimes she was a “stick-your-head-in-the-sand-when-something-bad-comes-up” kind of girl.
So, this September, I want to point out that any cancer can crop up at any time. It’s scary and an unfortunate reality we live with. During the five years Sarah fought her cancer, two other very dear friends died from their cancers – a melanoma and a rare sarcoma.
As Sarah became closer to a much larger community of men and women who were fighting all kinds of cancers, we lost even more new friends. BUT, we also gained many new fiends and most are survivors today. I’m counting our collective blessings for that.
The ovarian cancer thing really gnaws at me. Mostly because there’s stuff people should know and can do about it. The first thing you should ask is “what are the symptoms.” Because knowing them and paying attention to your body can save your life. Did you know that ovarian cancer goes undetected far too long, too often? It can be one of the most deadly cancers for women. Not because it’s not treatable, but because once it gets to stage 3 or 4 it’s much harder to treat and often returns over and over and over. The earlier it’s detected, the better the chances for long-term survival!
Okay, okay. I hear ya! Here are the symptoms:
– Bloating
– Pelvic or abdominal pain
– Trouble eating or feeling full quickly
– Urinary symptoms, such as urgent or frequent feelings of needing to go
– Feeling tired more than usual (not usually listed, but this was big for Sarah)
Early stage ovarian cancer CAN be detected via these symptoms. No doctor in their right mind is going to think you’re crazy for asking, especially if you say you’ve been having more than one of these symptoms.
This summer, after Sarah died, I heard many stories of woman getting checked because of Sarah’s story. Unfortunately, at least one was diagnosed with ovarian cancer. The good news? They caught it early! And she’s being treated. If she hadn’t been checked she could still be wondering, and getting worse.
I’ve also heard stories of women who got checked and were given a clean bill of health. Taking the worry off their shoulders when they were feeling a little uneasy. Music to my ears (and I’m sure to theirs).
Earlier this spring, I went to my dentist and he saw a spot on my tongue. They said I needed a biopsy to be sure it was nothing dangerous. Whoa! This is my tongue we’re talking about. Kind of important! Yes, it freaked me out a little, but I knew I had to do it.
The surgery was a little painful, because they had to cut a small chunk out of my tongue. (During the painful stuff, I thought of Sarah for strength.) The spot turned out to be nothing, THANK GOD! And, the hole in my tongue healed up very quickly. There isn’t even a scar. Weird. But, best of all, I’m healthy, and not worried.
When you talk with your doctor, make sure you go armed with lots of questions. Ask whatever you want and don’t let them go until YOU are satisfied that YOU got what YOU need to know. Asking pointed questions about this stuff can save your life. If you don’t feel like you’re getting a satisfactory answer from your doctor – or they blow you off (yes, I have heard of this happening all too often) – then go see another doctor. I know! It’s a pain in the butt and takes extra time out of your busy day, but what are a few hours when you could be adding years to your life?
I’m sure Sarah would agree with me. She wished she’d gone to the doctor long before she actually did. She had reasons why she had held off. Things like just not wanting to deal with it. Or saying to herself “well, I’m young, I’m healthy, it couldn’t be anything bad.” And of course she was exhausted and didn’t really want to go see a doctor. I probably could have pushed harder, too. But, hindsight is 20/20.
On a Tuesday in May 2011, Sarah died. It was 5 years after she was diagnosed.
Now, in May or September, or any other month for that matter, make sure you remember the signs for ovarian cancer. Whether it’s you or a loved one, if there’s concern, go get it checked out. Better safe than sorry.
To close today, I would like to share a quick story from a friend, Dawna Leger Phillips, who recently said her own good-bye to Sarah while on a Buddhist retreat. Here are some of her words and a photo:
“The Great Stupa of Dharmakaya is located on the 600 acres of Shambhala. It is said, “anyone who approaches a Stupa with a pure heart and the intention to benefit others will receive its blessings.” On my last day at Shambhala, I walked to the Stupa and made a final offering. As I placed the Ovations for a Cure bracelet, which I had been wearing more times than not since Sarah’s death, on someone else’s offering of C3PO*, I spoke these words, “Sarah Sadtler Feather, wherever you are, may you rest in peace, may your heart be open and your body strong” and then I let her go, I let her be… It was not an attempt to forget about her but, instead, to detach myself from this part of my past and to simply let her be on her way and to let myself be more mindful of every present moment. This was one of the gifts given to me at Shambhala. I am learning to let go; to trust; to be gentler with myself and with others; to become more peaceful, tolerant and compassionate; and to be more present in the tiniest of moments that make up my big life… I’m still learning…”
Photo by Dawna Leger Phillips
*For those of you who knew Sarah, you will fondly recall her sense of humor and her love of fashion. You might also recall her boys’ love of Star Wars and her naming her home oxygen tank R2D2. I thought Sarah would find humor in the placement of my offering as a sash across C3PO. It is as if he’s saying, “Thank you! So long! May the force be with you!” 🙂
Thank you Dawna! I agree. May the force be with us all!
Much love,
Mr. Wonderful
All You Need Is Love
For spring break in April we visited a friend’s beach house on Buzzards Bay. Originally, we were to visit our happy place in the USVI, but Sarah’s breathing was constricted so badly she could barely walk to the car. She was on supplementary oxygen 24/7 and the amount she needed was increasing weekly. Travel by plane, let alone a trip with a 9 hour flight, followed by taxi, boat and truck rides would have been impossible. Not to mention having to walk up and down almost 200 steps every time you wanted to go to the beach or have a meal. For the fit, it was fun. For Sarah, it would have been hell.
Our dear friends offered their house, and we gladly accepted. It was perfect. Only one flight of stairs. And, with it being less than two hours from our house by car, we could take the kids, the dog, and all we needed for the week. Even a portable oxygen concentrator.
While Sarah slept most afternoons, the kids and I were more adventurous. Kayaking to the playground further down the bay. Visiting the local zoo. Walking the dog down to the point. Or just playing on the beach.
Sarah stayed inside the entire week, never leaving the house. She was comfortable and safe. Reading. Writing. Sleeping. Breathing. She watched her boys through the large picture windows as they ran along the beach, looking for sea glass and shells. Playing with the dog. Enjoying their youth.
We were together. We had this one week to be a family again. Just the four of us. No one else to help, or interrupt. Just us. Together each day and night for meals. Together for reading, playing games, watching movies, talking and snuggling. It was beautiful. We discovered that this vacation was about one simple thing: love.
It gave Sarah the strength to do what she had to do. It gave us the strength we needed for our journey forward.
Before she died, Sarah asked me to write a post called: “All you need is love.” I’ve been thinking about this now for more than two months. In the early days, just after she died, our love was the cause of the deepest pain I have ever felt. Such an incredible sense of loss for me and our boys. But I embraced the pain, accepting that she had reached the end of her amazing voyage. She and I had come to a place of peace long before she died. We knew the destination, just not when we would get there.
Now, the rawness of her death is gone. The deep, searing pain is gone. The frustration and sense of “what now?” has passed. Sarah would be pleased. I’m where she wanted me to be.
What’s left? The good parts of love. The part I remember when she was there by my side. When we held hands. When we ate dinner together as a family. When we would all hold hands and shout out, ONE… TWO… THREE… FAMILY!!!!! The beauty of being a family; it’s a really good, strong feeling that fills my heart every day. It’s not hard – all I have to do is look at our boys. I believe they feel it, too. I can see it in their smiles.
This week, we’re back at our friend’s house on the beach again. I had to work, so Supermom came back up and spent the week with us, taking care of the kids like the champ she is, while I made the long slog in traffic to and from Boston. It’s been really nice having her here. We all miss Sarah, but being here together makes it all okay.
As I think about all this love and how important it has been to our family, it has made me think of Sarah’s friends; OUR friends. So many people have grieved for Sarah and miss her in their own way. Yes, it’s different from how the boys and I miss her, but there are so many who loved her – and for many different reasons.
Over the past months I’ve discovered that different people express their love in different ways. Some send cards. Some make donations. Some call, email or post on FB to say “hi” and see how we’re doing. Some post on Sarah’s or The Carcinista’s FB pages to say they miss her or are thinking of her. Some ask us over for dinner or to spend the weekend with them. Some make things and/or sell things to honor her and make donations to her favorite charities. Some are running and biking great distances to honor her by raising money for cancer research and aid. Many are there for us whenever we need a little boost. And every one of those friends is taking time out of their busy lives to show their love in their own way. What works for them. What makes them feel better. And that’s okay.
So, no matter how love comes or is shown, sarah was right: love is special. It is the power that keeps us together when things get really tough. Sarah’s love will always be a part of our family. And we are glad that we’re able to share a bit of that love with you, too. And glad that you are willing to share a bit of your love for Sarah with us.
All you need is love.
Mr. Wonderful
Someone Called the Hotline
Well, well, well. SOMEONE has been doing their homework, faithful supporters. When I sent out my plea for more focused energy and good wishes, prayers, karma, etc. etc., I must admit I wasn’t expecting such immediate and obvious results!
I arrived at the Brigham today fully expecting to leave with a hole in my back and a bag of pee hanging off my hip, and I wouldn’t be lying to admit that the thing I was most disappointed about is my then-inability to wear skinny jeans tucked into my fabulous new cancer-kicking boots. But I bucked up, since losing a kidney altogether wasn’t really in my game plan either, and plopped in the waiting room to finish a two-week-old People until my buzzer went off.
I was escorted down to the prep area, and asked to wait before changing (into another dynamite johnny/slipper socks ensemble) for someone from Radiology to come talk to me. This wasn’t a surprise; I was expecting just a conversation about conscious sedation or something, so I laid back and closed my eyes for a few.
The cute Radiology doctor came and shook my hand, and told me she’d been on the phone that morning with my urologist, Dr. Kenneth Branagh. It seems that sometime between my 11/19 CT scan, which showed the hydronephrosis (swollen left kidney) that required stenting, and last Wednesday (12/15)’s CT scan, the situation resolved itself. No, for real. The blockage is still in the ureter, which meant that the stent couldn’t go up, but it must not be a complete blockage. There is no swelling of the kidney at all, and my kidney function is totally normal, creatinine at 1.1.
I was so gobsmacked I thought I was being Punk’d. (And, frankly, a visit from Ashton Kutcher really would have been the icing on the cake.) I said, “So, basically, Merry Christmas to me?” And she said, “That’s what your urologist said!” Then after a nurse de-accessed my port, I wandered upstairs to tell my friend/ride that we were free to go, and came home for a Class A, stress-free nap. Bag-free, too. Everyone here at Casa Carcinista is doing a little happy dance tonight.
So what I need to know is, to whom do I send the thank-you note?
Creeping In
Wow, this cancer is serious business. By my calculations I’ve been off of chemo for just three weeks, but I can feel things growing in there. A knot of lymph nodes in my neck that had gotten smaller during chemo is getting bigger again, and is now, literally, a pain in my neck. The pelvic tumors, which were actually responding to the chemo at first, are growing again and pushing on my left sciatic nerve. And, most disconcertingly, I’m finally understanding that classic ovarian-cancer symptom of “a feeling of fullness or inability to eat” — most of the time, it feels like my dinner consisted of six or eight large bricks. (Don’t worry; I’m compensating for the lost calories with french vanilla ice cream.)
So, is this the part where I start complaining? Maybe. I’m trying to keep my mouth shut around the house, because I know how upset it makes certain-members-of-my-family-who-shall-remain-nameless. And we’re all trying to keep our eyes on the prize: I’ll start this trial next week and the drug will do a bang-up job of knocking back the cancer’s growth and all my symptoms will fade.
I must admit, though, the cynic in me is starting to get up a good head of steam. The hope is still there, the belief in miracles, the willingness to place my life (again) in the hands of one of the most capable medical teams in the country. But combined with the respiratory stuff that’s been going on since the end of September, these new symptoms are stark reminders of just how close to the edge I’m riding these days.
In August, I asked my oncologist (one of the foremost experts in the field) to be honest with me. I said, “I know doctors don’t like to make prognoses, and I promise I won’t hold you to anything you say, but you have a lot of expertise with this disease, and I need to know. If I stopped treatment today, how long would I have?” (A part of me couldn’t believe I was asking this; I have spent so much of this illness focused on the fact that I will get better that even broaching the question of not was a shock.) She told me that I’d have about six good months, and around a year altogether. At the time, I thought, “Well, thank heaven I’m not stopping treatment. I need WAY more than a year.”
Only none of the damn treatments have worked. Do I have six good months left? The cynic figures I’d better really enjoy Christmas this month. Like, REALLY enjoy it. And then the hope side chimes in, “People have been sicker than you are now and recovered. Miracles happen every day.” Yeah, but they don’t, too. People who were diagnosed after I was are already dead. Maybe I’ve already used my miracles — IP chemo, my crazy HIPEC surgery, my previously stellar fitness level. That 35% five-year statistic wasn’t threatening to me a bit until about three weeks ago. Now I’m wondering about May. Whether I should have had a 39th birthday party. Whether it’s worth buying a new pair of flat-heeled black boots.
Though I’ve been sick for four and a half years, aside from acute times like post-surgically or during chemo, I’ve been able to live a relatively normal life. But now, I can’t ignore it anymore. Now, there’s always something.
photo credit here.
Looking For Footholds
Wednesday was supposed to be easy. The First Descents camp directors had scheduled a “day off” the rocks, to give us time to recuperate from Tuesday’s fun, and to give us all a chance to hang out and have some fun (more fun, that is). I’m not sure what “easy” schedule they were working from, but the “day off” started with an (optional) drive to the top of Rocky Mountain National Park to watch the sun rise (freezing; early; stayed in bed). Next was a late breakfast after an 8:30 yoga class.
Yoga – I’ve got this one. While not a tri-weekly practicer, I’ve been known to rock a reverse triangle pose or two. I was excited to 1) stretch out my really tight hamstrings; and 2) prove I wasn’t a total slug decimated by treatments and high altitude. How the mighty have fallen: by the second sun salutation I was gasping in child’s pose on the mat. The (very inspirationally fit) instructor’s breathing directions (“Slow breath in as you rise; exhale and touch the mat in forward fold,”) mocked me, as it took three inhalations and exhalations to complete each bend.
By the end of the practice, I was in corpse pose on the mat, blinking back tears of frustration at my inability to do ANYTHING. How the hell was I going to make a multi-pitch climb up an enormous rock the next day, when I couldn’t even finish a simple sun salutation?
Fortunately, the cinnamon-bread-hot-apple-compote french toast breakfast helped quiet my concerns for a while. The main planned activity of the day was a drive (whew!) up into the Park to 12,000 feet, with an optional hike or two. Since I seemed to have reserved my seat (“Shotgun!”) for the duration, I had an amazing view as the road got narrower and less paved. It’s amazing how BIG everything is in the West. When we stopped above the treeline so the willing (and waterproof) could hike the last thousand feet to the summit, I had a few quiet moments in the van with CMS guide Li’l Bits. He asked me if I was nervous about the “graduation” climb the next day, and I admitted my suspicions about my endurance. He said, “I want you to take some time with the idea of us carrying you up the approach so you can save your energy for the climb.” (My emphasis.)
Here’s my thing. Having grown up as “the one who doesn’t do much,” I’m a little prideful about my activity level, even as a cancer patient. Voted “Class Couch Potato” in high school and known for saying, “I”ll be here when you come down” on family hikes, the picking’s been ripe with me and not-achieving-athletically. So to have people I’ve only known for three days peg me as the physical underachiever in the group, whatever the reason, stung. A lot. Having one of the staff carry my backpack up the hill, or bring an air mattress for me to take a nap (!) was one thing, but letting them take on hauling my sick carcass up the hill to the rock face? Another thing entirely.
I realized, as I found myself explaining furiously to Li’l Bits how uncomfortable the whole idea made me, that no one in this group considered me a slug. No one thought that I was slacking off the climbing so I’d have more energy to… I don’t know, nap later. The longer I sat with the idea of getting a ride (all the way back down the mountain, through the snow and incredible scenery, past rutting elk and moronic tourists), the more sense it made: this was a rock-climbing camp, and the team of amazing volunteers, staff, and guides were doing their jobs by making sure everyone in the group succeeded at getting up that hill. By letting go of my pride, I was offering success not only to myself but to the whole team. (After all, “Life is full of setbacks…“)
After a solid hour-long nap, I was ready for the team outing to the nearby microbrewery (not to mention a diet Coke and some fries. The vegan organic food was DELICIOUS, but after a while a girl just needs some aspartame and some sat fats). In the ensuing three hours (during which I sipped a third of a beer and guzzled water, thank-you-very-much), I laughed harder and more frequently than I have in at least ten years. There were pranks delivered, great jokes told, toasts drunk, patrons scandalized. And we were all home in time for (another outstanding) dinner. By which point I had thoroughly settled into my role as sedan-chair princess: I was even protesting loudly (tongue-in-cheek) that I refused to climb any simple path on the grounds that the First Descents camp was billed as a rock-climbing camp and that hiking was not in my contract – if they wanted me on the rock, they’d have to get me there themselves. During the three days of the camp, I had reached the magic tipping point (or whatever) of First Descents: these people, whom you may only have known for seventy-two hours, care not one iota what you do for a living, what body parts you are missing, how close you are to dying. What they want is for everyone to KICK ASS at the rock-climbing and for the whole team to be up there, together, at the end of the day, cheering on your teammates and reveling in your success.
My battle had become, not pushing myself past the definition society had put me into of “cancer patient”, but holding myself back from doing all the things I wanted to and had hoped to when I signed up, because the destination was more important than the journey.
Photo courtesy Wiki
Next: The Longest Day
Catching My Breath
Of course I didn’t sleep well on Saturday night. What with the day being exhausting and the nervousness about missing my flight and the excitement about First Descents finally being here, I maybe strung together three hours of sleep. Just the way to start four days of exhilarating physical exertion, right?
Our group of thirteen campers found each other at the baggage claim area of the Denver airport in two shifts with the help of the very enthusiastic camp director and EMT volunteer. By the time I rolled up, some of the campers had already nailed down their nicknames and were admonished to use them exclusively, but their first stabs at a name for me (“Starfish!” because of my earrings) didn’t feel right. I wanted a perfect fit; there is a chance I’ll be using this nickname for years, and just-okay wouldn’t do. I knew it would have to come up organically, so I waited.
First Descents camps assign everyone a nickname upon arrival to distinguish the camp experience from the real life that many of us would like to forget. Camp is the opportunity to rise above your definition of yourself as “cancer patient” or “cancer survivor” and simply to be the person you are that week. You don’t have to be anyone’s mom, kid, wife, husband, sister, friend, co-worker; just yourself, an incredible sense of freedom. Not to mention a really easy way to remember the names of twenty new people at once.
Six of us plus Patch, the FD EMT volunteer, made our way to the short-term parking lot and a rented van in which we’d ride the hour-and-a-half to Estes Park. I’m not sure where the immature urge came from, but my competitive-sibling gene forced me to shout, “SHOTGUN!” by the side of the van. Hey, if no one else was going to call it… The nickname was found. (And, when discovered later by members of my family, confirmed as unassailably perfect.)
The first night, following my well-deserved nap, included an up-to-the-minute personal medical review with the staff and medical team (during which I filled them in on my fevers, lungs, and failed clinical trial), a delicious vegan organic dinner with the other campers, staff, and guides, and trying to remember everyone’s names. After icebreaker games (flashbacks to freshman orientation) and a rundown of the next morning’s plans, everyone drifted off to bed.
Monday morning, excitement made it easy to wake up and get ready to go; my new gear was shiny-clean and primed for action, and the two-hour time difference meant I had even had a decent night’s sleep. The altitude was having an impact on my breathing, though – at 8,500 feet the atmosphere contains about 35% of the oxygen it does at sea level, and I huffed and puffed climbing a flight of stairs or completing a sentence. Being winded made me nervous about the rock-climbing: how much would I be able to do? Would my fitness level and push-ups training make any difference?
The training climbs were planned for a rock formation not far from the lodge, within walking distance (coolers of food and drinks! folding chairs!) from the parking area, and the campers scrambled up to the base, eager to get started and afraid of how we’d do. The gusty wind made it hard to hear the instructors’ careful lessons on knot-tying, belaying, and checking our gear – I found out we’d be belaying each other; somehow that made it more scary than if the instructors had been directly involved. I hadn’t grasped the importance of the trust between teammates, the one climbing up and the one keeping watch at the bottom – when I climbed, I was in control, even though the belayer was watching my every step and keeping me safe from falling. But once it came time to belay back down (to lean back at a 90-degree angle from the rock and hang by my harness from the rope and pulley controlled by my belayer on the ground) I was terrified. You want me to what? Walk backwards off this cliff hoping that my brand-new best friend is paying attention and holding on tight? All the 40 feet back to terra firma? Holy crap, what was I doing here?
BAM, the magnitude of where I was and what I was doing hit me. I was up on the side of a rock, in a city and state I’d never been to before, surrounded by people I’d only known for eighteen hours cheering me on and hanging my butt, literally, in the balance. Cancer patients put their trust in doctors, nurses, family members… people we’ve known for years, interviewed carefully, background-checked. Who were all these campers? Ultimately, I think it was this overwhelming unfamiliarity that helped me sink into the new, delicious abandon of trust, tip myself over the verge and bounce backwards to the ground.
The cheers and support of my new best friends made all the difference that day – they helped each of us to climb past our personal insecurities and to back down to earth again over and over. As we rooted each new climber to the top, as we spotted belayers and checked everyone’s gear before a new climb, our reliance on each other and our shared triumphs hitched us all to a common purpose that WASN’T cancer, and that felt really, really good.
After lunch in the sun I tried a tougher climb, but about halfway up the altitude and the fresh air and physical efforts conspired to stop me – other campers later spoke of watching me “hit the wall” on the side of the rock face – and I cried, “I’m done!”, belayed down and headed for my chair for a nap; I knew I was finished for the day. I dozed in my chair for an hour or so, then the concerned doctor gave me a ride back to the lodge and my bed around 2PM. As I slept more, my headache grew. I wanted to take some Tylenol to kill the headache (it couldn’t be dehydration, as I’d had about two quarts of water since we started climbing), but was feeling nauseous and knew I needed to eat first so I wouldn’t get sick. Vicious cycle – I dozed off and on for about two hours until Clover came to check on me and I asked her to get the doctor. Hack finally showed up and gave me some Zofran for the nausea and some Diamox for the altitude acclimation, and forced me to eat yogurt. The food helped me get down some Tylenol; that and some more napping wiped the headache clean. Turns out all that water is nothing for a day of exertion without some salt: should have been Gatorade and a bag of chips. Lesson learned.
By 6:30 I was able to get up and have dinner with the crew, and felt better enough to join the after-dinner “campfire” session to talk about the day and how much fun we each had had, and how proud we were of our accomplishments. And to enjoy the dynamic that was developing – the personalities were linking, meshing, overlapping, and we were getting comfortable enough together to start making fun of each other, the true test of friendship. Things were starting to get good. My addition to the evening’s observations was that FD staffers and volunteers are TOTALLY as cool as the hype I’ve heard about them – their enthusiasm was contagious from that first moment at the airport.
Next: Overestimating my abilities…
Photo courtesy: Wildflower
Extended Stay
A very dear (and possibly quite intoxicated) friend emailed me this afternoon with a link to Christopher Hitchens’ beautifully worded essay about his cancer diagnosis, saying it reminded him of my writing. While I am highly flattered, and definitely aspire to that level of proficiency (not to mention professional success), the essay did strike a number of chords.
Hitchens speaks of the discovery of his illness as “…a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.” This international one-way trip is the most shocking transition, especially for people (henceforth known as “patients”) who were previously healthy and unencumbered by medical interventions any greater than the occasional Advil. With diagnoses like ovarian cancer, what you think at first will be just a brief visit turns out to be a longer stay, with an extendable visa that might last the rest of your life.
For the past few years, I’ve envisioned myself as I always was: a mom, wife, cook, fashion fiend, friend, sister — exercising, writing, cleaning, driving, living my life — who also happened to have cancer. This summer, however, the paradigm has shifted. Now I feel like I’m a cancer patient who also occasionally writes, walks the dog, folds laundry, and makes dinner. My treatment and attendant side effects have gotten more insistent, more interruptive. I have to have my daily meds, straight from refrigeration or a cooler, at the same time every day. Within three hours, I need to be near indoor plumbing. By mid-afternoon, I need a nap. Water tastes horrible, so I have to bring my own beverages. Comfy shoes. Short walks and a place to sit down. (I’m starting to sound like my grandmother. Who’s 103.) I can no longer be the same person I was in that other country.
A part of me longs for the early stages of my illness again, that optimistic sense of purpose and determination, the adrenaline-charged vigor of the attack. Like a Saturday morning, the future was still hazy but full of potential; the fear of the unknown can be enervating but at least it’s a plan. Hitchens is starting chemo for his esophageal cancer, and I wish him health and strength to get through the journey. I miss the innocence and blind optimism and faith in medicine that carried me through that first summer with cancer. But the wisdom and perspective of the ensuing years I wouldn’t trade for anything.
Okay, maybe a clean CT scan. Or a book deal. Hitchens? Throw me a bone, eh?
Photo credit here.
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 
