Transformation, turning points and clarity in life.
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!
Be well,
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
Honoring Sarah Sadtler Feather (The Carcinista)
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.
Sarah asked that, in lieu of gifts or flowers, donations be made in her honor to First Descents or Ovations for the Cure.
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
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Date: Monday, May 16, 2011
Time: 11:00 am
Location: St. David’s Episcopal Church, 763 South Valley Forge Road, Wayne, Pennsylvania 19087
Taking The Reins
First, apologies to those of you who were greatly confused by my last post. I lost a few edits in the internets (can’t even blame it on Microsoft!), including the crucial little addition of “Last…” before “…Monday” in the first paragraph. So all of what you read about happened April 11th, not the 18th. Probably the distance from the event helped me look upon it with such a healthy dose of scorn; if it had been this week, my pride might still be wounded.
“So,” you reason, and correctly, “the meeting ‘Thursday’ happened a week ago and change; tell us what happened already!”
The visit itself went very smoothly (although you can bet that SuperMom and I found a wheelchair with a fresh O2 tank right away, and didn’t mess around with using my own portable liquid). If you’re looking for more slapstick fun, you’ll have to check back later and see if I’ve made a fool of myself again. Thursday was quite calm.
I was joined rather quickly by my oncologist, Dr. A, and the Palliative Care/Pain Management specialist, we’ll call him Dr. Feelgood. I asked about other treatment options beyond the Navelbine, and Dr. A mentioned IV Topotecan, which would bring with it the standard side effects of nausea, constipation, diarrhea, and fatigue. I asked about percentage of efficacy, and she told me that there would be a “5-10% chance of any effect” at all on my existing disease, and that “any effect” would mean maybe 1-2 weeks of additional life.
Wow, I thought, doesn’t sound like the teensy weensy percentage of results outweighs the potential of feeling even worse than I do now. What else you got?
“What else is there?” I asked, in proper English.
She said I could go on weekly Taxol, although as we all know and love, the #1 side effect of Taxol is baldness, and I’m sorry, but I promised myself a year ago that I wouldn’t go out without hair. Plus, there would be only the same very slight percentage chance of there being any effectiveness at all, and that would only extend my life by a week or two, all while lying in bed feeling crappy.
So with firm conviction, I said, “Enough. I don’t want any more treatment. If something miraculous-sounding comes up in the Clinical Trials department in the next few weeks and I’m still well enough to get accepted, I’d love to hear about new options, but these choices are not good for me. I’m declining any more treatment.”
Mostly, what I was thinking was that my tolerance levels are pretty low already; if I can barely handle my kids being around me when they get wild today, how will that go when I’m feeling sick and staying in bed because of chemo? I’ll be a royal bitch, that’s how that will go. I’ll have to ask someone to keep them away from me, and that’s NOT how I’m going out.
The percentage of happy is more important to me now than the number of days. Quality over quantity.
Dr. A cried. (!) Mom cried. I cried. Dr. Feelgood laid his therapist “I hear you taking control of your life and it’s a good decision that’s right for you” vibe all over us. There was lots of hugging. Then the fabulous N.P. came in and she cried, Mom cried, and I cried all over again. More hugging. Everyone told me how strongly they supported my decision, how they thought it was the right thing to do.
But for possibly the first time ever, I didn’t feel like I needed validation on my decision (no, seriously, ask my mom). I knew I had made the right choice. I’m TIRED. Tired of feeling rotten, of being stuck in the house, of not being able to do anything for anyone but myself (and even then just barely). I’m tired of switching horses mid-stream every six weeks. If there had been ANY response worth a damn from my lung mets since they showed up in 8/09, I might be more interested in fighting a longer battle. But there hasn’t been, not one. And I’m done.
I love how willing everyone is to pitch in, but I know it’s hard on everyone (especially the intimate family who sees me all the time) to have to carry this load. I want to go out in charge of my life, with a little dignity left. Blackmailing friends into coming to visit by making them bring offerings of Starbucks Chai Latte. Being able to sit at the dinner table and make my kids laugh.
So I’ll certainly keep posting, but from here it might take a slightly different direction. And I’m happy to answer any questions you might have – ask away! But I’m already feeling better without chemo on board, so unless you have a hotline to some pretty powerful folks, I’m going to let it ride.
And I’d love to give appreciation to those of you who envisioned me as a pit bull, one who would grasp at any straw to milk every second out of my life, for my kids’ sakes. Turns out what’s best for them is to have their mom AROUND and PARTICIPATING, not hiding inside all summer and watching their birthday parties on video at the end of the day. So I’ll fight while the fighting is good. And then I’m going to have a chocolate milkshake and a really killer nap.
Today Has Been Brought to you by the Letter ‘I’
‘I’ for “insane”. “Incredible.” “Inconceivable.” “Ican’tbelievethisishappening.”
Last Monday was completely off-the-charts crazy. Let me tell you all about it.
No, wait, it’s way too much. Lemme give you the highlights:
- Awoke at 5:15AM to make 7:00 phlebotomy appointment (say that ten times fast) at The Cancer Factory.
- Finally allowed myself to be wheeled around TCF in a chair, since I had trouble catching my breath after walking up three steps and across a lobby on Saturday night, even with 3 L/min of O2
- Didn’t think to attach nose hose to air tank on wheelchair; stayed connected (for 3+-hour tour) to portable liquid canister that I’d been breathing on since 6:15am. Usually I hook onto a wall nozzle for most of my visit. [NOTE: this is foreshadowing.]
- Navelbine not living up to expectations; i.e., breathing continues to worsen. Please go to radiology for immediate CT scan.
- “Immediate” is a relative term; arrive promptly, but sit-and-wait for two hours. Scan, then return to NP’s office for further instructions.
- A mere 45 minutes later(!), NP finds me to say that scan shows further, millimeters-larger growth of tumors in all areas. No point in continuing Navelbine infusions as they are clearly not working. Please make appointment for Thursday to come back and talk with oncologist about other potential treatments, their side effects and efficacy rates.
- Wheel downstairs, return to parking garage, check out. Turn onto Brookline Avenue to realize my port is still accessed.
- Around block, park at old building drive-up entrance, persuade door guard that Mom can live-park there for five minutes while I dash down to Radiology to have my port de-accessed (remove needle from chest port, left there for cancelled infusion).
- Find available phlebotomist, convince her I don’t need access anymore today, have needle removed. Start to climb (slowly, slowly) spiral staircase from basement to street level. Get winded, stop to rest multiple times. Reach lobby, resting elbows on knees to catch breath in chair; approached by stranger who asks if I’m okay. Tell him I’m just headed to car, and stagger out front door just to realize that my portable tank, on which I’ve been breathing for over 4 hours, is completely empty.
- Collapse in front seat as panic sets in; huffingly tell SuperMom to return to valet in other building and find wheelchair with O2 tank so I can breathe while we go back to clinic to have portable tank refilled for drive home. Total panic; feel tingly all over, nauseated.
- Ticket-gate attendant finishing long chat-up with driver in front of us (as I continue feeling more nauseated and frantic) finally gives us our turn; SuperMom, holding it together nicely while explaining what we need, gets ticket, whips around to valet and tells him to get a chair with a tank NOW (see “Shirley MacLaine, Oscar-winning speech”), while finding me a plastic bag into which I yak my blueberry yogurt (fuchsia pink; poor dude with rescue chair must have thought I was exploding or something) twice. Finally chair dude hooks hose to tank and I’m back on three liters. Mom hands off the keys and we go back up to 10th floor. Emergency passes, and I’m pleased to notice that I’ve not only managed to keep fuchsia barf off floor and out of hair but also off pristine white tee-shirt. ::Rockstar.::
- On 10th floor, Receptionist pages Respiratory Therapy to come help; Super-tech David gets me hooked up with a higher-caliber portable liquid tank and a complimentary refill that will get me home safely.
- FINALLY leave hospital around 1:30 and get my post-hospital-visit chocolate milkshake by 2:10. Nap by 2:30, feeling like I’ve been run over, backed-up-on, then re-run-over by a sizeable piece of construction equipment. .
Hermit Crab
I seem to have dropped off the face of the earth, rants about pinknausea notwithstanding. I’ve been trying to figure out why I don’t feel like talking right now, and it seems to come down to chemo. (Doesn’t it always?)
Starting actual chemo again (vs. a clinical trial or biologic or something) threw me for a loop. Apparently I’ve blacked out how crummy I feel after infusions, because when I collapsed into bed at 5:30 on day 3 of the last cycle, I was surprised. Mr. Wonderful said, “Don’t you remember? This is usually the time you start feeling like crap,” but I had forgotten it. Like how you swear immediately after giving birth that you will never, ever, ever do that again, then twelve months later you’re all, “Let’s have another one!”
So I spent day 4 and 5 in bed, me and the cat and the Compazine, and by the end of the weekend I started to feel like myself again. But apparently aging your body forty years in four years has some drawbacks, and I no longer rebound like I did in 2006. I’ve been having trouble just getting out from under the coughing courtesy of Estes Park’s elevation, and still haven’t resumed my exercise schedule. My lungs don’t like it, not one little bit – not even climbing the stairs, and last night Mr. W and I had a giggle at me huffing and puffing after pulling off a tight long-sleeved t-shirt.
Now I’m at The Cancer Factory for Cycle 2, and anticipating another week of feeling lousy. But why that has to send me into hiding for the next two weeks as well, I can’t figure out. I’ve turned into a terrible phone friend, forgetting to return messages and schedule dates. Some days I just drift along until it’s time to get into bed again, and that’s about all I can handle. But other days I’m doing my little suburban-mommy thing, driving and shopping and cooking and all, yet I still can’t manage to get my head out of my domestic bubble.
So I guess this column is a sort of apology, to those I owe phone calls to, or to those with whom I made tentative plans and then never followed up. It’s not you, it’s me. It’s taken me two years of therapy to be able to accept these words and feel comfortable saying them: I’m doing the best I can.
Photo courtesy here.
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
Fresh Horses
Sorry I’ve been so quiet lately. The Magical Mystery Drug has been doing a number on my stomach, and between napping to kill the heartburn and napping to kill the grouchies, I’ve been a little hard to engage in conversation.
Last week’s Monday visit was a bit of a surprise. Although in hindsight, I sorta knew there was some news coming down the pike, seeing as how I waited FOUR AND A HALF HOURS for the results of my CT scan. The news is: lung mets don’t like the Magical Mystery Drug anymore, and they don’t want to play. They’re going to keep on growing the way they want to, and pfphthbpbhpt to anyone who says different. Pelvic tumors are following orders, shrinking and softening and being little Trial’s Pets, but noooooooo, not my lungs.
Thus I’ve spent the past six days waiting for an appointment with my other oncologist, who the Phase I doc said would probably want to take me off the trial and start chemo again (but I should keep taking the nine delicious pills a day just in case she didn’t want me to stop, because once I stop I can’t start again, etc. etc.). Today I met with her, and once we’d worked out that no, Phase I doc didn’t want me to continue the trial even once I’d met with her; he said SHE’d probably want me to stop it and go on chemo (you’d think the inter-office communications over there at that world-class Cancer Factory would be a little clearer), there’s a new plan in place.
Starting next Tuesday, I’ll be hopping back on the chemo train: carboplatin and Alimta. Supposedly not too debilitating, and I’ll get to keep my hair. (Good news/bad news: while I like having hair, mine is really pissing me off, and I miss my perfect, ten-second-toilette wig.) And the schedule will allow for me to still make my First Descents climbing trip on the 19th.
I was pretty discouraged, feeling like, “how many more damn things do I have to throw at this disease?”, but now I realize I have lots of options still open to me. Once chemo has stabilized my lung disease, we can start looking once again at the over 300 clinical trials that are available to platinum-resistant ovarian patients. So many choices… think I can find one in Miami for the winter?
Photo here.
How To Help A Cancer Patient, Part III
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.
Comfort
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.
Nausea
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).
Sleep
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?
How To Help A Cancer Patient, Part I
How To Help A Cancer Patient, Part II
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 