Bet You’re Wondering…
…how my trial is going. It’s certainly been an interesting week.
Monday I spent twelve hours at D-F. TWELVE. You see, when you agree to participate in a clinical trial, and that trial is being sponsored (read: paid for) by a company with a potentially viable therapy (read: big chunk o’ change) at stake, they own you. And the horse you rode in on. So after fasting for four hours, I had some blood drawn, peed in a cup, and took an EKG. (Guess they were expecting different results than the EKG I had had seven days prior.) Then I waited for my drugs to arrive. Two hours later, I was given an orange prescription bottle with nine grey capsules in it. They tasted horrible, but I had breakfast in my sights (an hour after taking them), so down they went.
After an impromptu visit to the ladies’ while I was getting some lunch in the cafeteria, I realized the meds were having an adverse effect on my GI tract. Like, for the next four hours. Immodium for that, plus Zofran for the nausea, and I was okay again. Blood draws at one, two, four, and eight hours after my meds meant I left at six, not eight, but by the time I got home it might as well have been midnight.
Not only do the study funders now own copious quarts of my blood, but they also collected my urine for the first 24 hours after my dose. Yes, all of it. In big gallon jugs. On ice. In a cooler in my room. As a décor item, I don’t recommend it.
Tuesday morning I dragged my carcass out of bed for a big diner breakfast, feeling like I’d spent the previous twenty-four hours in an airport moving heavy luggage around, but coffee and chow set me right. And by Wednesday, I was feeling nearly normal (whatever that is). So the daily trip back to The Cancer Factory for my 10:30 AM blood draw wasn’t the end of the world, although traffic was so bad sometimes I thought it was close. (Tourist season. Meh.)
The long and short of it? It seems that the drug doesn’t really affect me adversely, and a pre-dose Immodium should (hopefully) negate the GI issues. Oh – but there’s another thing: apparently, women who have had similar reactions to mine to the drug also spend their one-week-out-of-four without the meds fighting a raging, itchy, full-body rash with either steroids (aaaarrh!) or Benadryl (zzzzz). So I’ve got that going for me. Next week should be very interesting.
And I’m supposed to stay out of the sun. Yeah.
The up side? A noted 40% reduction in disease load in similarly affected women. I’ll take it.
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!
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.
