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
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
Give Me a Break
The trial continues. Week Two of taking the fabulous drug daily, all nine capsules of it, and I’m beat. Possibly from the effort required to swallow nine capsules at once. I’ve never had a problem taking pills in the past, but this really frosts the cupcake. Why, in our era of superb medical advancement and death-defying technology, is this pharma company incapable of cramming 450 mg of my mystery drug into five capsules? Or three?
Aside from increasing my snark quotient, said mystery substance is wearing me out. Maybe it’s all the peristalsis, or maybe I’m just getting old. Or possibly since I’ve been actively fighting this beast for over eighteen months now without a break, I’m losing my elite-athlete-like (ha) endurance. I’m a lover, not a fighter. And I don’t think four weeks off to wash the Avastin out of my system counts as a break. Every time I stop to examine my alternatives, though, I realize: they suck. So back at it I go. But I’m really sick of:
- Flirting with nurses to make sure I’m the favorite
- Peeing in a cup
- Repeating my last name and date of birth to prove I’m really me (who the hell would pose as a cancer patient?)
- Sleeping with my support stocking on
- Having the inside of my mouth taste like an ashtray and not getting to smoke first
- Being too tired to play tennis, swim, ride a bike, walk up the stairs, cook dinner, host a playdate
- Short hair
On the bright side, I am not bald, throwing up, peeling, recovering from an abdominal incision, or dead. I can still drive, give directions, boss my kids around, surf the internet, and laugh at a dirty joke.
I think I need an attitude adjustment. Possibly an expensive spa treatment. Fortunately, I have one scheduled for Thursday morning. Hope I can drag my sad old carcass in there.
Thanks for listening. We now return you to your previously scheduled Eastern Seaboard Inferno of a day.
At least I can still nap.
Low Simmer
Lying around and growing tumors is hard work – I’d forgotten how much it takes out of you. I’ve been drug-free for two and a half weeks now, and I can feel the evil creeping up. Which gets a girl to thinking: thank heaven for modern medicine. How much time would I have without the upcoming trial? Six months? Four? What would my quality of life be? Yeesh.
Fatigue is a constant companion now – I feel like I’m wearing a diving weight belt around my waist. Going to the gym is a bit of a farce, and if someone hadn’t invented the Chuckit!, I think my dog wouldn’t be speaking to me anymore. The cat, on the other hand, is so glad to have me back on the lazy side of the fence.
My trial coordinator said that they are getting “encouraging” results from GDC-0941, and my oncologist is “very excited” to get me on board. I have a full day of tests (EKG, CT, blood tests, urine culture, etc. etc.) set up for today, and then I start the trial on the 21st. I’m feeling optimistic, but wondering how much progress the tumors will make by then. I hate to give up any ground from my chemo of last summer – it feels like I’m betraying the hair loss, fatigue, and all the side effects I went through to “let” the tumors grow back. Especially since I currently resemble Mike Brady. Yea, hats!
Erosion
Some days I feel like a regular person. Aside from my daily nap, I run errands, walk the dog, cook dinner, sort the junk mail, fold the laundry. Except for my goofy haircut, you’d never know I am sick.
Today is not one of those days. I’m completely drained. I’m not sure if it’s the allergies (Massachusetts is covered in green pollen) or what, but in my Pilates class yesterday I had trouble completing any of the exercises (that usually make me sweat, but not collapse). It was as if someone was squeezing handfuls of the bottoms of both my lungs. We had a dozen errands to run in the afternoon, and by the time I’d dropped #1 Son off at soccer practice, I could hardly bring myself to heave my body out of the car and climb the stairs.
This morning seems to be little better. At the gym, I had to dumb-down my not-so-strenuous treadmill workout, and still hopped off every five minutes for a water break. At the park, I felt so fatigued I wondered if I’d make it back to the car. Even the dog seemed to know not to make me work too hard, and behaved himself.
At the risk of sounding like Pitiful Pearl, I’m flat. My feet are killing me. My sinuses feel like there’s been a knife fight. And I’m noticing that despite my ability to stand up to the flood of finite treatments and surgeries and to keep on truckin’ in the battle of Me vs. Ovarian Cancer, I’m wearing away, little by little, in the face of a slow trickle of endless chemo and side effects. Is it the Cytoxan? Is it the tumors? My lungs feel funny – is it the metastases? I can’t say, at least not until my next scan (5/19). But it’s getting harder to pretend I can do it all in the four hours a day I seem to be able to stay out of bed.
Gee, I might have to add a morning nap. That’d be terrible.
Photo courtesy http://www.reallynatural.com
Get Up Offa That Thing: Exercise Helps Cancer Patients
Don’t hate me because I’m in good shape.
When I was younger, I was a sloth. My mom signed me up for gymnastics classes, diving classes, riding lessons, the local swim team. I didn’t last long in any of them. The problem was, they all involved exercise and effort. I was much more of a sit-down-and-read-a-book kind of girl. Because sports were mandatory at my school, I volunteered to be the goalie for both field hockey and lacrosse, if the coach would let me get out of running laps with the rest of the team. (Hey, if I could stand in one place for the whole game, why did I have to get in shape?) I was even voted “Class Couch Potato” in my senior yearbook.
Then, when I was 21, I met this guy. He never sat still. Rollerblading, cycling, running, hiking, sightseeing… if I wanted to spend time with him, I had to get up. But still it took an engagement ring before I really got serious about working out. (Holy crap, a wedding gown? I better get my rear in gear.)
Fast-forward to the birth of my first son. All of a sudden, working out became a treat (sort of), a ninety-minute period of alone time when I was responsible for no one but myself. And, as any mother, stay-at-home or otherwise, can tell you, we don’t even get that in the loo. If I had to exercise for some peace by myself, I’d do it. (Never mind that it had to be at 5:30 a.m.; that just gave me the excuse to nap when the baby napped.) It turns out I am vainer than I am lazy.
Fast-forward again to my life P.C. (post-cancer). When I recovered from my first surgery, I realized that without all those tumors inside me, I felt better than I had in at least a year. Possibly since before I had had kids. So I kept working out. And during the IP chemo, which I was told came with “crushing fatigue” (boy, did it ever), I kept working out. Some days just a lurch down to the bottom of the hill and back, but I got moving. It helped me to feel in control of my body, in control of my life, in a disease process that is totally out of the patient’s hands in so many ways. It gave me time to think things through while I staggered, and make some personal decisions without interruption. I’m convinced that having a pretty high percentage of muscle mass helped me come through the six rounds of IP cisplatin as strongly as I did.
Once chemo is over, every time, and I start crawling out of the pit, exercise helps me feel like a normal person (at least until I catch sight of my squishy, pale, bald self in the weight room mirror). It helps me get my energy back sooner than I would have just waiting inside my house. It helps me get rid of the carbo-belt that develops around the waistband of chemo patients, thanks to the fabulous anti-emetics available nowadays and the raging cells looking for sugar.
Today, I found a study that shows how cancer patients that get regular exercise have more vigor and less emotional distress than cancer patients who don’t. (Sign up for a free MedScape account to read it – they have great articles.) Which I probably could have told you without the grants and the patients and all that time, but now we have proof.
So my advice for cancer patients: GET UP. Lurch down the hallway and back again. Once you can do that five times, add some stairs. Go for a swim. Walk the dog. Go down to the end of the driveway and get the mail. Once you finish chemo, treat yourself to a gym membership or a daily walk with a friend, and keep moving. The oxygen will help your body recover; the muscles will burn off the spare tire, and the companionship will keep you coming back.
Look, I love an afternoon in a comfy armchair with the cat and a good book as much (and probably more) than the next girl. But it isn’t going to prolong my life the way being in shape will.
Besides, the chair and the cat will still be there in an hour.
No Flatline On The Horizon
After 24 hours of jitters and bootless speculation (none of it in the wee small hours of the morning, thank goodness), I had my appointment at the Phase I Clinic. And while I was more than a little cheesed to discover that my oncologist had not actually conferred about my current state of affairs with the trials doctor I saw today, his description of the trial-drug landscape was enough to make me forgive her.
There’s no way to tell which trial will be available to new patients in four weeks (the length of time I need to wait after my last Avastin before I’m “clean” enough to start a trial), but between receptor inhibitors and protein inhibitors there are at least six studies that would be right for an ovarian cancer patient in my situation, and there are more studies opening all the time. And the doctor said that he has many patients who move from one study drug that’s not working for them to another, to another, to another until they get a good fit.
I’m still really uncomfortable about all the uncertainty. Will my onc choose to continue the Avastin and add another drug? Will I go on one of the studies? Oral meds or IV? Once a week or twice? Paper or plastic? Aisle or window? Hair or no hair? Fatigue or no fatigue? It’s frustrating to think of going from as strong and healthy as I feel right now to being exhausted and feeble again. I deal so well with this nebulous future.
And now that I think about it, for me and for all cancer patients, the most unpleasant part of the decision-making process lies between the discovery of bad news and the inception of a new treatment plan. Between the bad CT scan and the surgery date. Between one plan of action and the other. As you may have heard, the waiting is the hardest part.
At least it looks like the future is a little brighter than it was yesterday, even if getting there is going to take a while. Roll with it, baby. More info to come after next Thursday’s appointment.
(With apologies to U2, Tom Petty, and Steve Winwood.)
Save Money: Get Cancer!
Recent articles in the media may give you the impression that cancer can be expensive. So expensive, in fact, that many patients need help in paying for their treatments. But I’ve put together a little list of the fantastically fiscally responsible features of this insidious illness. Check it out:
Baldness: Eliminates costs for hot water to wash the hair, electricity to blow-dry and straighten the hair. No shampoo, conditioner, frizz serum, or hairspray. No salon appointments, cuts, color, etc. No razor blades or shaving cream, waxing or eyebrow appointments. Average annual savings: ~$2,500 – 3,000.
Fatigue: Depending on your pre-cancer social life, savings can be significant. No cost for movie theaters, club cover charges, bar tabs, or concert tickets. (Who could stand up for three hours straight?) Deduct the cost of increasing your cable selection or increasing your Netflix membership, but average annual savings: $500 – 3,000.
Figure changes: Who knows what size you’ll be next week? Depending on your treatment protocol, you could be pumped full of fluid, plumped up on steroids, recovering from surgery, or in no mood to eat. And since the only places you’ll go will be the drive-thru at the pharmacy or a medical facility, you’re going to be looking for comfort anyway. Buy some yoga pants and this fleecy-lined sweatshirt in three colors each and you’re all set. Shelve your shopping addiction until your shape has settled. Average annual savings: $1,000 – 10,000 (depending on your habit). [NOTE: I didn’t really do this, but hypothetically, it could work. Nothing could stop me from shopping. Nothing.]
Feet: Don’t need heels (see reduced social life). Don’t need new trainers (see fatigue). Yoga doesn’t take shoes, and besides, your feet hurt. Get some snuggly boots or comfy soft slip-ons and relaaaaax. Average annual savings: $250 – $750+.
Nutrition: Eating out is limited to take-out, since who wants to be perky enough to be in a restaurant for an hour? People will be bringing you food since you’re too tired to cook, and other than that there’s a case of Ensure in the cupboard. Bananas and yogurt will round out the selection. Average annual savings: $300 – 1,000+.
Reading: You can cancel your magazine subscriptions. People will bring you the current issue of every trashy Hollywood tabloid, and, if they’re really good friends, shopping bags full of shelter mags. Plus, you’ll be spending a ton of time on the internet doing treatment research, reading killer blogs and connecting on i[2]y.com. Average annual savings: $50 – 300.
Home decor: for the first two weeks at least after your surgery, friends and relatives (especially those at a geographical distance too far to visit) will send flowers. LOTS of flowers. Plants, cut blooms, and, if you’re lucky, gorgeous bouquets from Winston’s. Since you’ll be a little immunologically compromised, the nurses won’t let you keep flowers in your room, so they’ll all have to go home. Which means that no one will notice the dirty slipcover on the armchair or the fact that the neglected and frustrated dog has eaten the doormat. Average annual savings: $100 – 500+.
See? Now run right out and tell your favorite cancer patient to quit their caterwauling about health insurance, co-pays, and pharmacy costs. This ought to cover at least one and possibly two recurrences of even the most hideous diagnosis. Right?
Post-Chemo Brain Reboot
It’s really amazing how my life has changed since October 8. I guess I’ve been on chemo or some other drug for enough months out of the past four years that I got used to being dulled around the edges. Like the aerator grill in my faucet had filled up with sediment, and the water that flowed was slowed to a trickle.
I’m not sure how much of my mental slowdown can be attributed to chemo brain and how much was due to my persistent, really frustrating fatigue. Anyone on chemo will tell you that forgetfulness becomes a way of life, and that you should probably put off your appearance on Jeopardy! until your hair grows back, if you’re really serious about winning. When you’re chemo-tired, and living your day from one sleep to the next (and there were definitely days like that), the last thing you have the energy for is coming up with a good blog topic or a killer craft to rock the next birthday party. But there’s also the possibility that the ass-kicking-name-taking process took most of the mental focus that I had outside of the eternal “what’s-for-dinner?” dilemma, and I completely lost all memory of being a smart person.
Now that I’m on the miracle drug, and my hair is growing in, and my body is (mostly) back under my control, it’s as if someone has CLR-ed my faucet and the water is running again. I wake up in the middle of the night and start thinking of things I’d like to do. Projects I’d like to complete. (Not just start, but complete!) Dishes I’d like to cook. Things I could make for Christmas presents. Stuff to write about. And when I wake up in the morning, I can actually remember the things I thought of in the dark.
I’m almost overwhelmed at the different trains of thought that I can keep track of at any given time. My mental soundtrack has been one or two notes simple for so long, I’d forgotten what it felt like to hear the full melody, harmony, counterpoint and rhythm rolling along with it. And far from being confused by the din, I’m enjoying hearing all the different notes, thinking about them individually, planning how to work on them, maybe even discarding them and moving on.
I’m not promising global domination, nor that my sedentary tendencies have been banished for good, but perhaps I’m starting to fit into these grown-up shoes I’ve been wearing for three-and-a-half years now. At least I’ll be better company at cocktail parties. And Alex Trebek should be quaking in his boots.
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 
