When “R2D2″ entered Casa Carcinista earlier this year to become a semi-permanent resident, oxygen entered our thoughts in different ways.
For the kids, it was an omnipresent-shiny-tin-can with a funny, 50-foot hose that was stuck up mom’s nose. Sarah’s Star Wars analogy helped them connect with it, and then mostly ignore it. An obstacle at times, the hose became something to trip over – or NOT – as doing so could evoke the wrath of Mommy. Sarah often joked about it with them, helping poke fun at the situation. The boys thought it comical to say “Mommy’s a hoser” or “Mommy, go stick a rubber hose up your nose.” Their laughter always brightened the room.
For me, it was scary. Like a stranger invading our home. An odd, noiseless, motionless machine with a coil of clear hose I could follow, like bread crumbs, to find my wife. Of course, R2D2 wasn’t the invader – just a shiny metal reminder of the real intruder that relentlessly conspired against our now fallen hero.
Ironically, my life has been riddled with oxygen woes as I’ve had asthma since I was 8. Hospitalized twice as a child, I experienced the terror, frustration and difficult struggle of breathing shallow, constricted breaths. But now, as an accomplished athlete with breathing under control, it was incredibly hard to see my dearest friend struggle.
For our hero, The Carcinista, oxygen simply meant: Energy. Function. LIFE. I believe she thought about this often, realizing the significance of the oxygen we all breathe every day. And thus, before she died, she asked me to tell this story about her “oxygen of life.”
On Thursday, April 28, 2011, Sarah put on her beautiful new party dress, ready for a night we had anticipated for more than a month. Our friends, A + S arrived. We loaded three portable oxygen tanks (not taking any chances) and were off to the Colonial Theatre in Boston to spend the evening in the presence of Harry Connick, Jr.
Over the years, Harry’s music had provided a consistent theme in our lives. It began with the first mixed tape Sarah sent me back in 1993. Then at our wedding, we danced a choreographed foxtrot to “She belongs to me.” Toward the end of the 90’s we enjoyed seeing him in concert. Seeing him again in April was special.
Throughout the concert, while Sarah breathed from her oxygen tank, she experienced another “oxygen” as she called it. She said, “music is the oxygen of life for the musician.” Sarah was a talented singer in high school, traveling with her a cappella group – and I suspect she had experienced this feeling even then.
But, this night in April was over-the-top. Harry was on his game; he even remarked, “Y’all are lucky you’re here tonight. You see, I’m feeling really good tonight. And if there was a night I was going to ‘win’ this week, tonight’s the night.” He was playing five shows that week, ours was the third. Maybe he says this every night? Not sure. But, he (and we) definitely “won” that night.
During the show, there was a series of deeply collaborative musical conversations that carried from one instrument to the next. At one point, Harry abandoned the piano, to take in a trombone solo by Lucien Barbarin. As Lucien jammed, Harry began to tap a beat. Then stomp. Then got down on his knees, slapping and sliding his hands and wrists on the floor. The microphone captured the simple, beautiful rhythmic beats as he and Lucien carried on this intimate, delicious conversation. Music flowing, exuding this “oxygen” Sarah described. A musical story was unfolding, conjuring the struggle of the life of the New Orleans musician. Music in their soul. Music as life. Music as the oxygen of their lives. If the rest of the concert could have been the main course, this would have been the dessert to beat all desserts.
After the show, Sarah and I remained in our seats, allowing the majority of the audience to leave. The 20 or so who had “after show” passes were guided to a room. We found an armchair in the corner for Sarah to sit comfortably. A few minutes later, Harry entered the room. Sarah gasped. “Quick, take some photos!” she said.
A life-long dream. A man she had admired for his musical and acting talents, comedic abilities, humanitarianism and more, was no longer on stage, but right there in front of us only a few feet away. Ultimately, Sarah just wanted to have a conversation. To know what it was like to talk for a few minutes about something that mattered to them both.
Harry made his way around the room, talking to one or two at a time. Posing for photos. Signing programs.
Sarah was patient, but anxious.
After ten or fifteen minutes, Harry came to us, and lived up to all of Sarah’s (and my) hopes. He was a perfect gentleman, remaining focused on Sarah the entire time we talked. Sarah ask a few questions and discussed, quickly, her idea about oxygen and music and their importance in life. Harry seemed to pick up what she was saying, and liked the analogy.
She was smitten. I was happy. At this point in her life, physical gifts meant nothing, but this was a gift that meant so much. An amazing night together. And she was able to experience, and cherish what she dubbed “a real LIFE moment.”
We went to bed that night, holding hands as we always did. Both happy. Full of love. We didn’t realize it at the time, but this was our last date. I look back now and just think, wow!
If you have the opportunity to see Harry Connick, Jr. in concert, Sarah would have said, “Do it!” If you don’t, you might still take a moment and listen to a song or two. While you listen, try to take it in. Feel the music in your soul. Breathe the oxygen. Enjoy.
I bought ‘em.
Thanks, everyone, for your support. I’m going in for my stent tomorrow afternoon (probably won’t wear the boots since I’ll be mostly in a super-sexy hospital johnny, freezing my butt off), but you bet they’re going to go with me to The Cancer Factory as soon as they arrive in the mail. Hopefully by Monday, but I’m not holding my breath. GO, UPS!!
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.
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.
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.
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?
After spending a few months immersing myself in the fashion trends for Spring 2010, I’ve noticed a bit of a difference between the way healthy people dress and the way cancer patients dress. And since I feel an obligation to my public to keep them well informed in this area, I give you:
The Carcinista’s Cancer Fashion Forecast, Spring/Summer 2010.
Cargo pants: Where the well-dressed trendsetter this spring will run right out for a pair of slim, cropped, drawstring-hem “safari” pants to wear with platforms and a silk tank top, the cancer patient will find the cargo indispensable for chemo days when you’re too tired to carry a handbag. The drawstring waist accommodates fluctuating sizes due to carbo loading, and the pockets will hold seven different hospital IDs, your insurance card, your cell phone, sugarless gum, and Prilocaine cream for your port. Forget the silk top: drips from the IV could stain. Instead, layer up with the most recent walk-for-a-cure tee and a hoodie to keep the chill of the waiting room off the back of your naked neck.
Nautical style: Striped sailor pants might look great with a cute scoop-neck tee and wedges on your way to a cocktail party, but since standing up for two hours and making conversation is probably out of your reach, count on the wide-leg silhouette to cover persistent lymphedema and the fact that you’re wearing slippers to the pharmacy. [Side benefit: what’s more nautical than a pirate? Sport your ‘do-rag with confidence.]
Ruffles: Feminine details abound on the runways for S/S’10 – use them to your advantage! A cute top with an a-line shape will not only disguise the muffin top that has developed since you can’t catch your breath long enough to work out, but the soft detail around the neckline will remind the world that you’re still a girl, despite your lack of eyebrows, lashes, and hair. Not to mention disguising the scar left from your port insertion procedure six months ago that won’t heal due to your low blood counts.
Maxi-dresses: Still a hot silhouette from last summer, the maxi has it all for cancer chicks. Empire waistline holds up breast prostheses; a-line skirt to the floor hides everything else. Bare shoulders let your scorching skin breathe during hot flashes. Where else will you find a legitimate garment that’s more like a nightgown?
Wedges: A heel that even a weakened babe can adore, they’re easier to walk in than a pump but still give you an extra three inches of height (spread out those pounds!). Closed toes and heels on espadrilles camouflage your parched skin and the fact that it’s been over six months since your last pedicure. They’re not only the perfect excuse not to have to take the dog out (“Can’t walk on the lawn in these shoes. Sorry!”), they also double as weight-training on those days you really need to maximize every move.
Boyfriend jeans: See cargo pants. When your waistline is four different sizes in three months, don’t even try to pick a size. Rock the baggy-pants trend like you’re doing it on purpose.
Soft pastels: Delicate colors won’t overwhelm pale skin; sweet shell-pink flatters ghostly complexions of every color, and minimizes the effect of dark under-eye circles. Careful, though – too close to lavender and you risk calling attention to the IV-stick-attempt bruises on your forearms.
See, girls? You can still follow the trends, even from the comfort of your own barcalounger. And while you’re sitting still, it’ll be so much easier for your support team to admire how stylish you look. I think retail therapy should be a required co-therapy with the standard chemo stuff, don’t you?