Our great friend and fellow blogger and radio host, Mel Majoros, AKA “The Cancer Warrior“, asked me to give her some thoughts about cancer awareness during September, Ovarian Cancer Awareness Month. I thought about it and decided to do something a little different: two stories about transformation, turning points and clarity in life – both before and after losing Sarah to ovarian cancer.
For all you Carcinista fans, I think you will enjoy this. See it here.
Let us know what you think!
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.
Sarah Sadtler Feather (AKA, The Carcinista) died at home on Tuesday, May 3, 2011 in the early afternoon.
Sarah was surrounded by her family and close friends for the days leading up to her death. When not sleeping, she spent time with her boys playing board games, reading books and having family meals. Sarah and Mr. Wonderful stayed very close to each other, cherishing their love and 18 wonderful years together. Her mother, father and sister and several very close friends shared family stories, memories and comfort. When Sarah died, we were all there with her, holding her to the end. She was truly brave; the embodiment of grace.
To honor and celebrate the life of Sarah Sadtler Feather
We will have two memorial services to help accommodate Sarah’s friends and family (per Sarah’s wishes) in the Boston area and in the Philadelphia area. She has so many friends and supporters and we want everyone to know they all are welcome.
Please join us in this celebration at either of these services:
Date: Friday, May 13, 2011
Time: 10:00 am
Location: Trinity Episcopal Church, 81 Elm Street, Concord, Massachusetts 01742
Date: Monday, May 16, 2011
Time: 11:00 am
Location: St. David’s Episcopal Church, 763 South Valley Forge Road, Wayne, Pennsylvania 19087
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.
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
Last week we started talking about useful products to keep in your (now-crowded) cancer-patient bathroom to help you get through treatments, etc. and back to your regularly scheduled life. Here are some more favorites.
Most patients, even newbies, have some idea of what to expect with surgery recoveries and treatments. There were some big surprises for me, though, and at the risk of sharing too much, I thought I’d pass along some trade secrets. It might get a bit graphic – apologies to the uninitiated.
Your bowels may never have been a problem until you were diagnosed with cancer, especially those of the lower abdomen and pelvis. But starting with CT prep (barium shakes) and moving right through surgery prep, anesthesia recovery, and on to chemo, there will be days when you can think of nothing else. (As a life-long poop-o-phobe, this was a horrible adjustment for me.) Start by asking the radiology department to give you Gastrografin instead of barium shakes before your scans. A flavorless vial of liquid that you mix with the juice or Crystal Light flavor of your choice, Gastro is orders-of-magnitude more palatable than that thick white crap. Not only does it go down so much easier, but it doesn’t seem to run like a Roto-Rooter through my lower intestines for the following three days. If your hospital/clinic doesn’t carry it, start complaining, loudly, until they do. I don’t care if it costs more – make the people who write the checks take a few swigs of the banana-flavored “Smoothie”, and they’ll be on your side in a jiffy.
On the other hand, anesthesia of any sort, various chemo agents, most narcotic pain relievers, and nearly all anti-emetics push your GI tract off the opposite cliff. (My gal Kelly Corrigan refers to it as “tear-jerking constipation” and is not wrong.) With the chemo protocols, it’s really smart (and pretty easy, once you figure out your patterns) to prepare your body ahead of time: lots of fiber, fruits and veggies, and plenty of hydration the day before your treatment. Once you’re on the chemo, make sure you keep your nausea under control (take the Zofran before you need it), but maintain your system with Senokot (or the drug-store generic) – I used to take one to two pills, three times a day, for the first week after treatment. If senna isn’t enough on its own, and you’re DRINKING tons of water and GETTING SOME EXERCISE (yes, even just a stagger down the block), you may want to add Miralax. I personally couldn’t stand this stuff, but have heard others swear by using it routinely. On occasion, I needed to escalate to Milk of Magnesia, and there were two post-anesthesia occasions when I had to ride the Fleet train. My advice: get on top of your symptoms early, and keep adding more aggressive interventions until the problem is solved. Skip the middle-of-the-night run to the 24-hour Walgreens at all costs.
Jeez, I’m just having a little freak-out that I’m actually discussing all of this. (See earlier comments about poop-o-phobia.)
When all of this colon fun gets to be too much, ask your doctor for Anusol. Take warm baths with Epsom salts. Stock up on Tucks and Prep H. ‘Nuff said.
The stomach gets really hammered during cancer stuff. Fasting for blood tests. Heartburn from chemo. Nausea from nearly everything. There are lots of options to get you out from under it, so don’t stop trying until you find a solution that works for you. My first oncology nurse, a 30-year veteran, God love her, told me when I was feeling nauseous, to eat something, and that might cure it. If eating didn’t make it better, then medicate it! I was lucky enough to have Emend covered by my insurance, and it was fabulous during my first round of chemo. Last summer, I got IV Aloxi as a pre-med before my carbo/taxol, and it worked just as well, without me having to remember to take it. Zofran makes me a little nervous, because although it’s very effective, and widely prescribed, it bungs me up like a cork. Ativan is lovely, if you can swing it, but there better be another responsible adult in the house if I take it. (Great for naps and bedtime.) These anti-emetics are so effective that even after four years of treatments, etc., I have only actually thrown up once, and that was when I was trying to avoid taking Zofran. Silly rabbit.
Heartburn during my IP chemo often felt initially like nausea, but once I started taking Prilosec every morning the nausea disappeared. If you’re feeling nauseous, you might want to start with heartburn meds and escalate if those don’t work (especially as they won’t terrorize your colon like Zofran).
One of the best (?) things about cancer is that I’ve been able to catch up on my sleep. Daily naps that I used to feel guilty about when the boys were toddlers are now necessities, and the family accommodates my soporific indulgences with good-natured ribbing, if not stocking feet. Thus I recommend a good pair of earplugs, which make napping anywhere, any time effortless. Next time you’re on an airplane, buy their blanket/earplug/neck pillow set, and you’ll have a Nap Kit ready in case of an emergency. All for less than $10.
Only sometimes you won’t be able to sleep. The steroids that come along with so many treatments can make sleep a tantalizing illusion, even when you’re exhausted. For you, I have no personal recommendation other than Ativan or Tylenol PM, which gave me just enough sleepy oomph to drift off and ignore my lower-back pain last spring. I’m sure there are better options out there, I just haven’t needed them myself – I hear Ambien is fantastic.
That seems to have exhausted my expertise for meds of all sorts. I can’t believe that we spend time talking about these issues, but cancer babes (and dudes) have to stick together and get through this. I’d love to hear about your favorites. Never know when I might need to use them, right?