Extended Stay
A very dear (and possibly quite intoxicated) friend emailed me this afternoon with a link to Christopher Hitchens’ beautifully worded essay about his cancer diagnosis, saying it reminded him of my writing. While I am highly flattered, and definitely aspire to that level of proficiency (not to mention professional success), the essay did strike a number of chords.
Hitchens speaks of the discovery of his illness as “…a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.” This international one-way trip is the most shocking transition, especially for people (henceforth known as “patients”) who were previously healthy and unencumbered by medical interventions any greater than the occasional Advil. With diagnoses like ovarian cancer, what you think at first will be just a brief visit turns out to be a longer stay, with an extendable visa that might last the rest of your life.
For the past few years, I’ve envisioned myself as I always was: a mom, wife, cook, fashion fiend, friend, sister — exercising, writing, cleaning, driving, living my life — who also happened to have cancer. This summer, however, the paradigm has shifted. Now I feel like I’m a cancer patient who also occasionally writes, walks the dog, folds laundry, and makes dinner. My treatment and attendant side effects have gotten more insistent, more interruptive. I have to have my daily meds, straight from refrigeration or a cooler, at the same time every day. Within three hours, I need to be near indoor plumbing. By mid-afternoon, I need a nap. Water tastes horrible, so I have to bring my own beverages. Comfy shoes. Short walks and a place to sit down. (I’m starting to sound like my grandmother. Who’s 103.) I can no longer be the same person I was in that other country.
A part of me longs for the early stages of my illness again, that optimistic sense of purpose and determination, the adrenaline-charged vigor of the attack. Like a Saturday morning, the future was still hazy but full of potential; the fear of the unknown can be enervating but at least it’s a plan. Hitchens is starting chemo for his esophageal cancer, and I wish him health and strength to get through the journey. I miss the innocence and blind optimism and faith in medicine that carried me through that first summer with cancer. But the wisdom and perspective of the ensuing years I wouldn’t trade for anything.
Okay, maybe a clean CT scan. Or a book deal. Hitchens? Throw me a bone, eh?
Photo credit here.
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.
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
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
Two Steps Forward, Three Steps Back
Have you ever had that dream where you’re running, something’s chasing you and you’re running as fast as you can, but no matter how fast you move your legs you don’t go anywhere? Yeah.
Got the results of the CT yesterday. (You see where this is going, don’t you.) The Avastin is successfully holding down the pelvic tumors – they’re even smaller than they were in November. The lungs, however, don’t seem to be getting the message. Old (tiny, glacially progressing) nodules have grown a millimeter or two; new subcentimeter nodules are appearing. No lymph node increases, nothing in the abdomen or bones. But those lung guys, off by themselves, clearly on their own program, making trouble.
I’m working on my optimism, but today it feels like my balloon is a little deflated. I know all the things I’m doing to take care of myself, exercise, diet, good attitude, and all the things my medical team are doing to take care of me, scans, great medicines, oodles of treatment options, are the best in the business. Seems the glacier’s gonna carve that canyon anyway.
The Avastin will continue; I’m meeting March 1 with the head of the clinical trial department to see if there are any open studies looking for a guinea pig who’s totally healthy except for the damn cancer. Let’s hope the nasty make-your-hair-fall-out-again studies are all full.
One thing’s for sure, I’m going shopping with my usual post-tax-return IRA deposit this year.
How To Help A Cancer Patient, Part I
When you first hear the words, “You have cancer,” instantly a million things pop into your head. If you’re like me, after the initial “Holy sh!t I’m going to die” comes, “Who’s going to run carpool this week?” or “Oh, no, my house is a disaster area and people will be coming over.”
Once other people hear you have cancer, they unfailingly end every conversation by saying, “Let me know what I can do to help.” But at the time, you can never think of anything, and then when you think, “Wow, I wish I had someone to walk the dog tomorrow…” you can’t remember who it was who offered to help (chemo brain). How can something so generous turn out to be such a royal pain?
Within about forty-eight hours of my surgery, my crack research team (read: family members with internet connections desperate to DO something) had located the best Gyn/Onc in the area for my case, researched the then-hot-and-trendy-new IP chemo protocol, sent Edible Arrangements, and hooked me up with a lifesaving website that would feature prominently in my treatment and recovery plans for the next three years (and may come around again).
Lotsahelpinghands.com is a website that allows an administrator (you? your BFF?) to set up a free homepage for the cancer patient and their family, friends, and supporters, who log onto the site and sign up with a password once they are invited to join. The administrator sets up “tasks” – events as simple as picking up drycleaning or running to the grocery store, or as complicated as making a meal with specific dietary requirements (not too spicy, the kids don’t eat tomatoes, etc.) and bringing it over to your house. The sky’s the limit; my administrator set up “daily laugh” tasks so people would send me email jokes, and people from my then-kindergartner’s class signed up to host playdates for him and his little brother. I had people weeding my garden, raking leaves and planting mums in the fall, and delivering more delicious dinners than any one family could eat in a month of Sundays, except Mr. Wonderful was involved so we ate it all.
The BEST thing about lotsahelpinghands (aside from it being free) is that it gives the overwhelmed family a way to pass off some of the crazy-lot of organizing that comes with the new regime. And the seemingly unceasing refrain of “How can I help?” has an easy outlet: sign up for the website and start taking on tasks.
The OTHER best thing about lotsahelpinghands is that it taught me to let go a little and lean on others. My family is so self-reliant (and Mr. Wonderful and I slight control freaks) that allowing other people to take over and fold my laundry was nearly painful at the beginning. But as my kids and I got more used to giving up some control so we had more time to be together as a family (especially important when it seemed there might only be a couple more years) I realized that it was one of cancer’s silver linings. My boys learned the value of doing for others, and we now are honored to pay it forward whenever we get the chance. The sense of community may have been more instrumental in my survival than the chemo.
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.
Easy Cancer Port Access for the Chic
When I sat down in the phlebotomist’s chair at The Cancer Factory for my blood draw on Friday morning, I unzipped my cardigan (very cute, gift from fab sister) and leaned back. The nurse was impressed that I had thought to wear a cardi and a scoop-neck (“Have you had a port before?” he asked – an odd time to feel smug), which allowed him to access my port (feels really odd) without my having to strip down, put on a johnny, etc. He said that some patients forget, in colder weather, and show up for treatment in turtlenecks.
Which got me thinking about an article that a friend of mine wrote in October for Breast Cancer Awareness Month. She was profiling a company, Healing Threads, that was started by three sisters, all of whom were cancer patients, that makes clothing for people who are in the hospital, either for inpatient or outpatient treatments. The jackets and pants, made of stain-resistant microfiber, have easy-access panels with velcro closures that allow nurses, doctors, and physical therapists to examine or treat one area of the body while leaving the rest of the body covered.
The fashionista in me likes that, while they’re not exactly cutting-edge design, they do have an ageless Asian flair, with Mandarin collar and frog closures, that will never go out of style. The patient in me likes that someone thought about more than just accessing our ports, all the way to modesty, dignity, and staying warm. As I mentioned in the article, giving the patient a way to take control of even the tiiiiiiniest bit of their treatment, in what is essentially an uncontrollable disease process, can be immensely empowering and comforting. And, let’s admit it, we’re all control freaks to some extent. Who wouldn’t want more control, and to look cute at the same time? Flashing people is so 2008.
I wonder if they’ll ever make one in cashmere?
ThanksGiving.
Sleeping in. Someone else roasting the turkey. Modern pharmaceuticals. Muscle tone. Indian summer. Indoor plumbing. Unconditional love. Friends. Good friends. Friends who sit with you during chemo. Friends who send cards. Friends who send gifts. Friends who send couture. Shiraz.
Dogs. Cats. Saturday morning pancakes. Cashmere. Down comforters. October. May. The blindness of true love. Coldplay. Homemade pizza. Having enough energy to cook really good food. Christmas. The way my kids smell. Yoga. Naps. Clothes hot from the dryer. Parking in the garage. A clean house. Date night. Toddler giggles. The Bristol Lounge. A capella boys’ choirs. The internet. Diet Coke. Jude Law.
Second chances. Third chances. Seventh chances. Tireless medical researchers. A sense of humor. A great-shaped skull. Discount retailers. Shoe shopping. Walking in the woods. Every day. Netflix. Hot showers. Maho Bay. French fries. Really good wigs. Sunbathing. A good book. Or six. Freshly painted toenails. Comfortable high heels. Hugs.
Family. Family. Family. Family. Family. Gumption. Self-confidence. A good cry. Qualified therapists. A sympathetic ear. Backup. Permission to fail. Not wanting to.
Tomorrow.
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 
