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
How To Help A Cancer Patient, Part II
With apologies to the layperson, this post is full of advice for patients.
I was never a product junkie. While I like makeup as much as the next girlie-girl, I can’t bring myself to pick up the latest eye shadow colors every season, nor to drop serious coin (which could be better spent on clothing or leather goods) on department-store or boutique cosmetics. Basics are really all I need, and a few hair products.
Any cancer patient will tell you that this just can’t be. Whether you’re stocking your medicine cabinet with countless orange bottles to counteract the side effects of your side effects, or piling on makeup to cover your ghostly pallor, the best home improvement dollars spent in my house would be to supersize the master bathroom to hold all my crap. (In my defense, it is only slightly larger than your average phone booth.) And while it may be hard to keep track of all the funny names on the orange bottles, and remember what product to apply to which body part and when, some of the jams and jellies I have found to be real lifesavers.
Skin
Depending on which treatment you’re receiving, your skin can be sensitive, ashy, dry, flaky, greasy, or broken out. I was lucky enough to encounter all of them, often simultaneously, which made amelioration a sophisticated juggling act. For my extra-dry body skin, I was given a sample of LindiSkin Soothing Balm. LindiSkin is a company that offers a range of products specifically created for cancer patients. Light on chemicals and gentle on sensitive skin, the Soothing Balm restored my so-dry-I-itched-til-I-bled skin last spring with a gentle scent and no trace of irritation. They also offer a range of facial products, although the rich Serum was too rich for my face. But the lotion is delightful, cancer or not, and the company’s dedication to cancer patients is impressive.
I also found solace for my cracked feet in a tub of good ol’ Bag Balm. Yes, sleeping with the air of lanolin issuing from your cotton socks may put the damper on romance, but so does having ogre feet. A week of regular shower-pumice-plus-lotion-under-socks, morning and bedtime, dials back the winter feet to survivable levels.
My fingernails are so weak that I can’t even squeeze a zit, but the short length gave me the courage to try some wacky colors for fun. Pedicures are practically a medical necessity, and I find that lying in bed staring at your feet is much more fun if your toes look cute. Treat yourself.
Cosmetics
When you’re pallid and ashy with those tell-tale red rings around your eyes, there’s really no way to avoid catching sight of yourself in the mirror and feeling sick. So when you have the energy to stand up in front of the mirror for five minutes, I highly recommend painting some life back into your cheeks. Start by evening out the discoloration (age, sun spots, all heightened by hormonal fluctuations) with a good tinted moisturizer. I love the combination of age-fighting and sheer color in the Olay Definity Color Recapture. One step takes half the effort of two! Add a gel blush (powder just emphasizes the ashiness of chemo skin) and some mascara, and you look twice as alive as you did before you started.
Brows and lashes gone? I wish I had a magic-bullet solution, but there’s really trial-and-error required to find what works best for you. My first round of bald-face, I got a comprehensive eyebrow kit from Anastasia and used the stencil-powder-wax combo, which does a pretty good job of staying on all day (until naptime, anyway). Last summer I used a perfect-taupe eyebrow pencil from Sonia Kashuk, but for some reason my eyebrow sweat glands (who knew we had ’em?) kicked into overdrive and I reapplied about six times a day. The pencils are sprinkled all over my house and car and purses. For my lashes, I compensated with a tapered line of dark-brown eye pencil on the top lid, since there was no way I could make a line of falsies look like anything other than a caterpillar parked up there. I like the Revlon ColorStay because it lasts most of the day, but really, there’s no way to hide the lack of eyelashes. I missed them the most.
Hair
I’ve heard lots of anecdotal stories that chemo hair grows back in curly on nearly everyone. It certainly has for me – I’m trying to decide if I like it better than baldness. Anyway, I have an enormous collection of different hair products for the many lengths my hair has been over the past four years. Gel for the slicking-back of humidity-one-inch ‘fro; waxy pomade for a little control of the two-inch-straight-up-not-quite-curls. The gold standards for all styles, though, are the Frizz-Ease line. I use the shampoo and conditioner, but use your favorites. Start post-shower treatment with the serum no matter what the length; it keeps down the frizz to manageable levels. I’ve got long-enough hair now that I can use the Curl-Perfecting Spray, too – it definitely make the curls cool instead of Napoleon-Dynamite crazy. NO HAIRBRUSH in the curls, EVER. Got it?
Next, we’ll talk about lifesaving products for your innards. Got any favorite skin/hair/face products to share?
How To Help A Cancer Patient, Part I
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!
The Silent Treatment
It’s so unusual that I haven’t posted anything this week. It’s not as if cancer has been far from my mind – quite the opposite, as I’m sure you can understand. It’s been hard to think about anything else. And yet, I haven’t felt like there’s been a post worth sharing kicking around in my brain.
Whenever I share bad news, I sort of hole up for a while. It’s not that I don’t want to talk to anyone, but I feel so BAD having to draw everyone’s attention back to me and my ridiculously persistent illness. I’d rather talk to you about Sex and the City 2, long weekend plans, chicken recipes, oh, ANYTHING else besides my effin’ lungs. I’m not sticking my head in the sand. I certainly don’t mind talking about it, but I hate knowing that my illness is causing distress. Which it is, don’t lie to me.
I know I’m not the center of the universe. But I can hear it in people’s voices, see it in their faces when they bump into me — they’re bummed I’m sick. I hate that. Not that you’re not allowed to feel your emotions around me, but I have a “no crying” rule for a reason. And I’m not past the angry-pissed-off-frustrated part of the bad-news-reception emotional cascade, so I’m not ready to cheerlead for myself yet. I’ll get back to you.
Have a great long weekend – maybe some time in the pool will cheer me up. Gotta get my Vitamin D, ya know.
Photo courtesy Edward Feather.
Insult, Meet Injury
I think I’ve been pretty reasonable during this hideous process. I’ve accommodated last-minute schedule changes, long-term expectation rearrangements, physical limitations, radical downgrades in physical appearance. I’ve taken it all on, maybe not smiling but resigned, and kept on going, because, really, what choice do I have?
Consider the camel’s back broken. Wednesday’s CT bad news led to this afternoon’s phone call from the clinical trial coordinator for my PI3K trial, and after a little dithering back and forth, she said that my onc wants me to start on the 21st of June. And the joys of clinical trials include really frequent office visits, which will start on the 21st and continue for the 22nd, 23rd, 24th, and 28th of June.
Astute readers (Cheesesteak) will note that that coincides with my not-widely-broadcast trip to Washington for a First Descents kayaking trip. I was really, really, really excited for this adventure; it’s totally unlike me to take on a physical challenge of this nature, and I was beyond excited to meet and make friends with the other under-40 cancer survivors on the trip. Alumni tend to refer to their “FD Families”, and I want one.
But I have to cancel. (I keep writing “cancer” – damn you, Freud.)
A quick email check-in showed that they have no other kayaking spots available for this year, although they could put me on the wait-list. I might be able to get a spot on a climbing trip in September.
Right now I’m so hopped up I can’t even conceive of this change. I booked plane tickets; bought an inordinate amount of the suggested “non-cotton” clothing. Was making peace with the fact that I’ll probably end up upside-down under my kayak and hoping I’ll have the wherewithal not to drown. I WAS EXCITED.
This is really over the top. I’ve been good; I’ve taken my lumps and (mostly) not complained. I’ve missed events, given up hope of starting a meaningful career; foregone chaperoning field trips. Gotten used to looking at the middle-aged lady who lives in my bathroom mirror, and the fact that she can’t wear high heels for more than thirty minutes. Accepted that my left leg is a whole pants size larger than my right. I’ve abandoned plans for a 5k, or the thought of becoming a decent tennis player. But I wanted cancer to give me something for all the stuff it’s taken away, and I thought that five days of kayaking and bonding with other like-minded cancer ass-kickers was an appropriate and reasonable expectation.
Apparently not.
Photo courtesy http://www.firstdescents.org
Caller ID
“Private Caller” is seldom a good sign. It’s usually some telemarketer totally flouting the FCC regulations that specify that our number is on the do-not-call list and making my marketer husband hot under the collar.
Or it’s The Cancer Factory. Which is was this morning. And not only just the hospital, but my actual oncologist. The day after a scan.
::cue ominous music: dum Dum DUMMMMM…::
Right. Pelvis and abdomen stable, she began. (Always lead with the good news.) Lung tumors progressing. (Ah, there it is.) Slowly, but progressing. Which, frankly, I’ve known for about three weeks. Ever since the allergy season started, I could tell.
Cancel the cytoxan. Bring on the PI3-Kinase inhibitor trial. They’re holding a spot open for me (let’s say it again: thank heaven I’m in Boston!), so as soon as my cytoxan wash-out (4 weeks) is over, I’m in like Flynn. Unless my tumor tests positive for the B-RAF genetic marker, in which case I would be eligible for that trial. And we all know how I love making important decisions. (Or maybe you don’t: when I used to have to choose between A and B, my mother would write each option on a piece of paper and mix them up behind her back, then I’d choose a hand. And invariably want the other option more. Pathetic.)
So we wait. Again. Lovely.
Maybe without the cytoxan I’ll have a little more energy for OMG! this weekend.
Still Looking For The Perfect Genes
Got a letter from the Cancer Factory yesterday – my tumors are not genetically eligible for the EGRF or HER2 receptor studies now underway at that esteemed institution. So I keep on with the Avastin and Cytoxan and see what other groovy trials are available next month.
Kinda feel left out, though, you know? Like a rejection letter from my first-choice college. Damn, now I have to go peel the sticker off my car window.
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.)
How To Grow A Tumor
You know how once you finally hear the new song everyone’s been talking about, you start to hear it everywhere – in the mall, in a commercial, in line at the supermarket? Since I started this little anti-white-poisons kick a couple of weeks ago, I’ve been hearing a lot more about food as anti-cancer medication than I ever have. And while I’m not sure that I’m onto something unprecedented and groundbreaking, there are links worth sharing, and I’m wondering why more people don’t.
When I wrote that I was cutting out sugar and white flour, one reader encouraged me to look not only at the sugar content of my food but also its place in the glycemic index, or how quickly the body turns it into sugar, and raises blood glucose levels, once I’ve eaten it. Her argument was based on the book Anti-Cancer, by Dr. Servan-Schreiber, which admittedly I’ve yet to read. (As I said before, I’m a little wary of people espousing radical diets as a way to cure cancer, and having been exposed to some more…um, enthusiastic proponents of various whole-hog lifestyle changes in the past [with little or no effect] I’m one to ask questions first and shoot second.)
But I’m an open-minded girl, so I looked into the glycemic index and its effects on the body a little further. [WARNING: scientific content to follow! Bear with me – I’ll try to keep it simple.] Raising the level of glucose (sugar) in the blood, which you do every time you eat, triggers the release of insulin in your body. Insulin breaks down and stores the sugar in your body for later use as energy. The higher the glycemic index of a particular food, the higher and faster it spikes your blood glucose level after you eat it. [Still with me?]
An increase in blood glucose also triggers the release of insulin-like growth factors (IGFs), compounds that play a role in the promotion of cell proliferation (more and more cells) and the inhibition of cell apoptosis (a cell’s self-regulating kill switch). In other words, with too much sugar in your blood, not only do some cells grow and multiply much more quickly, their automatic “time to die!” trigger is canceled.
Sound like anyone we know?
I’ve gotten my hands on some journal articles that have drawn a link between tumor growth and insulin-like growth factor (IGF). Some of them discuss the mounting evidence between the western, high-animal-protein, high-processed-carbohydrate diet and the increasing risk of cancer.(1) Others go as far as to draw direct links between high blood glucose, insulin and IGF and increases in tumor growth and decreases in tumor cell death: “Epidemiological evidence is accumulating and suggests that the risk of cancers of the colon, pancreas, endometrium, breast and prostate are related to circulating levels of insulin, IGF-1, or both.”(2)
So the short story is that too much sugar in your diet, and not just the classic “sweet” foods but processed grains, some fruits, basically nearly anything advertised anywhere, will spike your blood glucose, insulin, and IGF. And will fuel the tumors that you know about, if you already have cancer, or tumors you don’t know about, if you haven’t been diagnosed yet.
I’m just curious why my nutritionist at The Cancer Factory didn’t mention any of this when I met with her last year… You might want to pass this along.
[Thanks for hanging on ’til the end! I should probably reward you with a joke or something:
How many cancer patients does it take to change a lightbulb?
No one knows; they’re too tired to climb the ladder!]
Tell a friend.
- Nat Rev Cancer. 2008 Dec;8(12):915-28. Insulin and insulin-like growth factor signalling in neoplasia. Pollak M. Department of Oncology, McGill University, Montréal, Québec, Canada. michael.pollak@mcgill.ca
- Novartis Found Symp. 2004;262:247-60; discussion 260-68. Nutrition, insulin, IGF-1 metabolism and cancer risk: a summary of epidemiological evidence. Kaaks R. International Agency for Research on Cancer, Lyon, France.
Cancer’s Sweet Tooth, And Mine
About six months after my heinous surgery for my first recurrence, Mr. Wonderful, needing to DO something about this, hit up amazon.com for a box of Cancer Nutrition cookbooks. While I spent some time leafing through them when they first arrived, much to his chagrin I didn’t actually implement any of their eating plans, nor did I run out and buy the ingredients for the seven different varieties of kale-and-cauliflower soup. I eat veggies, but couldn’t stomach the thought of vegetarianism or macrobiotic whacko-ness…if these were effective cancer-beaters, wouldn’t we all be living on broccoli by now? Surely there would be a press release, and someone would be trying to make money on it.
My diet isn’t perfect, but we eat very well: lean poultry and fish, with the occasional hamburger or pork tenderloin; plenty of unrefined carbs and whole grains, vegetables, etc. We don’t eat out often, maybe once a month, and when we do, it’s usually a salad for me (but I’m happy to pick fries from my kids’ plates – no calories if I didn’t order ’em!). I drink only occasionally, eat a healthy breakfast every day, get plenty of exercise, etc. etc.
But oh, the sweet tooth. Raised by a woman who didn’t see the need for dessert after dinner every night, when I reached the age of independence, I started supplying my habit, and haven’t looked back. Now that I have discovered how hard it is to control my weight through exercise alone (thank you, menopause), I do limit myself to the single afternoon diet Coke, and I’ve trained myself to like black coffee. I can go nearly all day without naughty snacks, yet once the kids are in bed, the trolling begins. What am I craving tonight? Four marshmallows (25 cal. ea.)? No, those didn’t do it. Handful of Cinnamon Oat Swirls (130 cal. per 1/2 cup)? Nope. Keep looking… Peppermint Joe-joe? Heavens, no, those are 75 cal. a piece! Maybe a chocolate truffle (60 cal.). You see my issue.
Last week I read yet another (unconfirmed but footnoted with journals) article on the relationship between tumor growth and sugar. Upon further research, it appears the scientifically-reliable, journal-publishing, study-backed community is still unconvinced that cancer cells gain their evil powers from dietary sugar. But for some reason I felt as if I had crossed some threshhold, some point of maturity that gave me the strength to actually take this final stage of control of my diet. If I cut out refined sugars and carbs (table sugar and processed sweeteners, not honey or maple syrup; white bread and pasta, not whole-grain), maybe I’d give the Avastin a leg up and really knock those tumors down. What harm would there be? I’d still be eating carbs, fruit, veggies, etc., just more of a caveman diet. Not far from where I started, but without the useless sugar. Sure, go for it. You can always quit.
Seven days later, I’m shocked. Not only am I not feeling like I’m making any great sacrifice, I don’t even miss it. See you later, sugar. I started eating completely unsweetened cereal (used to eat Barbara’s Shredded Oats), and found myself, on Thursday morning, noticing the natural sweetness of a walnut. A walnut. I’m having a grapefruit with a drizzle of honey after dinner, and being satisfied, even full, and not looking for more. And some of you will argue that I didn’t have any to lose, which is false, but my (admittedly not bulky) layer of energy stores seems to be fading away FAST. Could it be this easy to keep my weight steady?
WHY DIDN’T ANYONE TELL ME THIS BEFORE??? (I’m looking at you, Ed and Mom.)
[I’ll keep you posted on further developments, including the results of my upcoming 2/11 CT scan.]
P.S. Ed, sorry about the cookbook thing. And not doing this in 2008.
P. P.S. Mom, I’m just kidding – I know you’ve been telling me this for years. Would you stop being right all the damn time?
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.
