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
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 