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
Au Bout de Souffle
It’s been an interesting week since I got home from the hospital. Breathing is not better than it was last week, and I still need to rest to catch my breath after changing my shirt, walking down the hall, or visiting the loo in the middle of the night. My medical team keeps exhorting me to give the old-reliable Navelbine a chance to work, that it’ll be at least three cycles (yesterday) and probably four (next Monday) before we start to see results. I’m hanging in there, and trying to keep my inner cynic quiet while twiddling my thumbs.
I’ll have plenty of time to do that, what with my new pain meds keeping me from driving and everything. SuperMom has come to town indefinitely to fill in my gaps…er, gaping holes. I hope that a switch to a Fentanyl patch next week will allow me to drive again, but for now I’m a Roxy-Zombie who’s great at conversation and sleeping, but not much else. Well, except finding pretty patterns in the rug or wallpaper or shadows and clouds.
Another delightful development is that our spring break is taking on a whole new shape. I’d say “I don’t want to talk about it,” but with my acceptance of my path on this journey comes a little peace at changing plans about which I can do nothing. Yesterday, Dr. A told me that she doesn’t feel comfortable with me taking an airline trip anywhere, which, following my last flying fiasco, I completely understand. And I certainly can’t be spending ten days (10!) on St. John at the end of April. No good medical facilities nearby; no liquid oxygen delivery, no emergency aid. Cancel the trip to my happy place — no one wants to go without me unless and until they have no choice.
So instead of flying, we’re looking for a driving vacation, preferably something within a couple of hours’ drive of Boston, justincase. I think we have a couple of good ideas; now we need to start convincing the kids that they’ll have just as much fun in New England in April as they would have had in the Caribbean, a vacation to which we have all been very much looking forward since, oh, the day we left in 2010. They’re good sports, but how much of the rah-rah Kool-Aid will they drink?
The good news is that we’re getting to the stage of my illness when people start coming round to see me all the time. Just for coffee and a chat, but I’m having lots of visitors, people I don’t see nearly as often as I’d like. It’s lovely! They come sit on my couch in the sun, bring me Starbucks, visit, tell stories and make me laugh, then go home just in time for me to take my nap.
Wow, I sound like an old person. Scrabble, anyone? (With all these meds on board, I’m an easy target.)
I Got The Fever
Jeez, just when you think life is getting a little predictable.
Week 4 of Cycle 2 snuck up on me. I was pleasantly surprised to discover, at my Monday appointment last week, that it was my week off of the Magical Mystery Drug. Skipping home an hour earlier than expected, with food in my tummy and a song in my heart, I anticipated a light and relatively carefree week of getting back into shape, tasting my food and drinking cool fresh water, spending time with my boys, and a long-anticipated family reunion weekend on the beach full of champagne, good company, and steamed fresh lobster.
Ha ha, said the universe, guess again.
Monday night at around 9:30, I started feeling like I was getting a fever. That’s weird, I thought, I don’t get sick. (Well, apart from the obvious.) Checked with the thermometer: yep, 101. Tylenol PM, bed. Tossed and turned all night, but by morning, it was gone. Felt better Tuesday morning, although not well enough to make it to yoga. No sign of fever, until about 5pm. After checking in with the team, they said if the fever went away that evening with two Advil, I was okay, but if not I should come in to see them Wednesday. Which of course I wanted to avoid like the plague.
Wednesday dawned sunny and fever-free. The boys and the dog and I spent the better part of an hour and a half in the woods hiking, feeling pretty smug. Until I lay down for my nap, and felt the fingers of fever starting to creep up my neck. I ignored them and tried to go to sleep, but I knew it was futile. Called the team and they said, “Come on in.”
Which is always fun with two kids. But they were fed copious amounts of bagged snacks and watched the Cartoon Network while I saw everyone, peed in a cup, gave blood cultures from port and periphery. I stumped everyone with my lack of symptoms, but that night the fever was back again.
And Thursday night. Good news: Mr. W makes dinner and cleans up from it. Bad news: Friday morning I get a call that I have a UTI. A UTI? With no symptoms? Oh, yippee, back on high-grade systemic antibiotics again. And they do nothing to kill the fever.
So I muscled through Friday and Saturday with nightly fevers, the usual fallout from antibiotics, and no energy. It was great to be on the beach and see family members from far and wide, but I wish I’d felt well enough to enjoy it.
And when I’m sick-sick, not just chronic-sick, nothing else gets done. No reading, no exercise, and as you might have noticed, no writing.
Let’s hope this… whatever is gone by tomorrow, so I can deal with a day at the hospital, the fallout from CT contrast, and more Magical Mystery Drug. And write about something a little more interesting than boring crap like my internal temperature.
Lighten Up
Last week we had a mini-vacation and went to stay with friends on Martha’s Vineyard. We slept in, ate too much, had beers with lunch, napped on the beach (my favorite four-word phrase in the English language), went out one night without the kids and finished conversations. Ate s’mores. You get the idea.
I had succeeded in mentally reminding myself for three mornings not to forget to carry with us or administer my delightful meds (which must, you remember, be kept under refrigeration below 46˚). Since there were coolers all around, going to the beach, etc., I was able to dump them in and choke them down in the vacation-short space between breakfast and lunch.
Reluctantly, on Saturday we packed up our bags, double-checking under beds, nearly forgetting swimsuits and towels drying on the deck rail. I loaded my bottle of iced tea and the boys’ water bottles into the freezer to cool down before packing the cooler for the trip home.
The horde of us descended on a fish shack in Vineyard Haven to grab some lunch before catching our 2:30 ferry. As we waited with the hordes of other hungry people for our lunches, though, we realized we wouldn’t have enough time to eat and still make the boat. We grabbed our bag of sandwiches, said goodbye to the wife and kids of the family we stayed with, and the dad drove us the rest of the way to the ferry dock. Hugs all around, double-check the back of the car for our stuff, and bundle ourselves into the growing line of passengers waiting to climb aboard.
Son #2 dropped his Gatorade bottle for the seven-hundred-and-forty-third time, and I told him, “One of these times, that bottle’s going to split open, and then you won’t have anything…to…drink…but…water…until…” ::Crickets::
“Mr. W, did you grab the cooler?”
“No.”
Crap. “Left my damn drugs at the house!”
I turned and started running (wearing a 35-lb backpack, no less) out to the street where I could see our friend had just been waved into heavy Saturday August Vineyard traffic by the cop trying to keep order. Thank heaven his window was open.
“MARK! MARK!” He turned to look at me.
“I LEFT MY DRUGS AT YOUR HOUSE!!!” (In hindsight, not the best sentence to shout across a crowded intersection in front of a policeman.)
Revision: “I left my meds in your fridge!”
He pulled back into the parking lot, and my three gentlemen shuffled over and got back in the Jeep. I started in browbeating myself about my forgetfulness. “Jeez, I can’t believe I forgot it. I’m so sorry to make you have to come back. I can’t believe I didn’t remember that stuff! How many times did I remind myself that I had to get the cooler? What an eejit.”
This went on for about five minutes. Then I stopped for a second, and realized that I was the only one beating me up about it. Not even any teasing (unusual). And in a flash of maturity, I quit. No one seemed to be upset about having to miss the 2:30 but me. And on second thought, what the hell did I care? Why was I getting all jacked up?
We rode back to the restaurant to finish lunch (the best lobster roll I’ve had in years) with our friends. There was another ferry at 3:45, which meant we’d get home to pick up our dog a little later. No harm, no foul – it’s not like we had an appointment or something waiting back on the mainland.
This verbal self-flagellation is a lifetime habit for me, and I suspect for many others. Does it come from my desire to cut on myself before anyone else gets a chance to? Or am I so concerned about inconveniencing others (and possibly having them speak disparagingly about me after I leave) that I am trying to make sure they know I’m not really that inconsiderate? Whatever the reason, it’s stupid, and a waste of energy.
It’s time to adopt the Dr. Seuss quote I heard recently and have come to adore: “Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.” I’m a good person, my friends know it, and my life is way too short to spend time browbeating myself for mistakes. Everyone makes ’em, and we’re all doing the best we can. Move on.
Back Seat Driver
A friend and I were talking this weekend about her upcoming vacation. She and her family are flying to Wyoming and renting an RV for a week of sightseeing – mom, dad, six- and eight-year-old sons. She was joking about her outrageous organizing tendencies, and her pre-vacation lists of what to pack, what to do, what to buy. We both decided, though, that the way to go about a traveling trip like this was not to adhere stringently to an agenda (“Come on, kids, eat quickly! We’ve gotta get going if we’re going to make the World’s Largest Ball of Tinfoil before 3 PM!) but to follow the planned route easily, staying relaxed and making allowances for spontaneity and unforeseen events (like ice cream stands). There are far fewer temper tantrums, from children or parents, if everyone’s going with the flow.
I thought about how this is the best way to parent, too. We all have preconceived notions about what parenting will be like (toddlers cheerfully playing house; our elementary school kids racing off the bus to give us a hug and tell us about their day; family dinners with animated conversations, in-jokes, and clean plates), and one of the hardest parts of growing up into our roles is realizing how far reality diverts from those notions (toddlers throwing poop; elementary school kids sulking into the house without a word; family dinners where everyone refuses to eat, speaks only potty talk, and is sent from the table in tears straight to bed).
Cancer has been like that. As I digested my diagnosis, back in May of 2006, I put together my idea of what treatment would be like: lose hair, spend summer in bed, fight like hell, receive clean CT scan, move on with my life. But as I struggled through treatments, trying to maintain some semblance of my former self, feeling horrible, I realized cancer had other ideas.
Boy, does it ever. My vision of a complete remission was marred by not one recurrence but two, the second of which refuses to let go of my innards. My vision of flowing locks has been replaced by persistent brown Nancy-Reagan-head and the cruel fact that no one checks me out any more, because I look like their mom. My early forceful, driving thought that I’d kick ovarian cancer to the curb and live a long, grateful, loving life has taken a back seat to the slow but steady drip of the odds stacked against me.
I’m not throwing in the towel. Not by a long shot. I’m still in it to win it, whatever road I have to drive down to get there. If this trial doesn’t work (I’ll know more by this afternoon) I’ll start another one. I might bitch about side effects, but I’m damn glad to still be here to experience them. I’m learning that the more I roll with the punches, accommodate changes in schedule, drugs, doctors, scan results, pull back my long-view to three months instead of three years, the fewer temper tantrums I need to throw. My expectations of life as a cancer babe might be growing up.
My hair looks a disturbingly lot like this.
photo courtesy http://www.dcrw.org
Swimmingly
I’m not sure what it is about swimming that appeals to me. Probably not the part where you have to wear a bathing suit, although it’s hard to get a decent tan fully clothed. (That’s a whole ‘nother post, that one.) And it’s probably not the part where you get all wet and your hair goes nuts and your makeup washes off. (Gee, now I sound like a high-maintenance princess.)
I was on the swim team for years. Not fast, usually last. Practice went on forEVer, and you can imagine how appealing that was to the Class Couch Potato. I still wonder whether the only reason I did it was to keep my family from pestering me about never getting any exercise.
But I love to swim. In a lake, in a pool, in a river, in the ocean. The best part is swimming underwater as far as I can, trying to make it to the other end of the pool in one breath. Something about the isolation, the peace of the water bubbling past my ears, the dolphinity of the whole experience really zens me out. The blue of the pool, or the dark coolness of open water.
And then there’s snorkeling. Last week, after absent-mindedly skirting around the reefed edges of the cove beach where we were staying, Mr. Wonderful and I rented sea kayaks (!) and took the boys for an adventure to a small cay about a mile off the shore. When we had beached the boats, the boys and I explored the beach and the Custom House ruins, while Mr. Wonderful explored the apron of coral that wrapped around the south side of the cay. After half an hour in the water, he came ashore, handed me the fins and mask and said, “You won’t believe this backyard treasure.”
Compared to the anemic reef left on the mainland, this was like comparing the zoo to the African veldt. Huge schools of fish, forests of healthy coral, herds of black sea urchins gathered under overhangs. Riotously colored parrotfish crackling nibbles of algae and making sand of old reef. Angelfish the size of manhole covers. And all the while, the gentle sway of the waves and the quiet of my breath in my ears. I was overcome with the simplicity and peace of the scene, the utter irrelevance of humans to the intricate relationships playing out below me.
I stayed in the water until my goosebumps had goosebumps; giving up was almost unbearable, like leaving a loved one for a long journey. I could have gone back in and stayed for days, but we only had the boats for three hours. I didn’t snorkel again during the last three days of the trip – I guess I didn’t want to be disappointed if the next reef didn’t measure up. But the pool opens in two weeks…
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There’s no way to capture an experience like that on film or video, so I’m sorry I can’t share it with you. Do you have a favorite meditative place?
The cay is on the right side of the photo. Best snorkeling ever. Photo courtesy http://www.maho.org.
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 
