It’s my cancer-versary

One year ago today the bottom fell out of my carefully-ordered life when I was diagnosed with breast cancer.

To say that a lot has happened in the last year is an utter waste of words. I’m not sure there are words to convey how much has happened in the last year; if there are, they are reserved for better writers than I.

Being diagnosed with cancer at age 40 is a shock. Duh. It’s scary and unexpected and unnerving. Double duh. 40 is when we hit our stride. For me, it meant my kids were old enough to not need constant supervision but to still need my guidance. I’d recently discovered tennis, the new love of my life, and had time and freedom to play often. I had a tight circle of friends who knew who they are and where they want to go. I was very comfortable with the direction of my life and the steps I was taking to make it the very best it could be.

Then came cancer.

That vicious beast had already stolen my sweet mama from me, when she was only 67. I was 36 and finding my own way as a mother, and needed her input and presence. But more importantly, I needed her friendship. She and I never had the contentious relationship that a lot of mothers & daughters have. We always liked each other. Maybe because we were a bit opposite: she was yielding and I was (am) opinionated. But maybe we just got lucky, and had that special relationship that some fates bestow upon some people but not others. The reason for our good relationship is immaterial; the fact was, we treasured each other, and losing her was the worst thing to ever happen to me.

Until April 27, 2010.

My guardian angels were asleep at the wheel. 

I’d been getting baseline mammograms since my mom died, since hers was a reproductive cancer and that put me at a slightly greater risk. More so, though, was my OB-GYN’s diligence. Her husband is an oncologist at MD Anderson, so she’s super-tuned to cancer and its sneaky ways of getting its foot inside the door. She saved my life. Pure and simple. And monumental.

When the news came on this day last year, I listened to everything Dr Dempsey told me about my cancer, as Boss Lady Staci dutifully took notes in Trevor’s stead as he hustled home from a business trip. I held it together until the end, when she asked if I had any more questions and I had one: how do I tell my kids? 

They’d watched their YaYa die from cancer, and while only 6 and 3 years old, those memories are powerful. They wanted a lot of assurance that my cancer was different in every way from YaYa’s and that it was not going to kill me, too.

One week after my diagnosis, Payton turned 11. I was gearing up for a double mastectomy, but wasn’t going to neglect his celebration, because if we can’t celebrate life and its happy moments, then cancer might as well come and get us all. We had the usual birthday breakfast on the personalized birthday plates, just as we had every year. As I placed his feast in front of him, I muttered my birthday wish, which was to make sure I was around to place that personalized plate in front of him on May 3rd for many years to come. My firstborn isn’t going to celebrate his birthday without his mama if I have anything to say about it.

The day before my mastectomy, Macy and I met Jeffrey, the orphaned mockingbird rescued by Amy Hoover’s family. We’d been hearing about this little guy, and my animal-loving girl needed to see him for herself. I had a million things to do to prepare for not only surgery but also weeks of dependency, but we made time to meet Jeffrey, and I’m so glad we did. 

Mastectomy day, I was up bright & early and ready to get the show on the road. Here I am at the hospital waiting to get de-cancer-fied.

Two weeks later, I turned 41. I celebrated in typical fashion, with a girlfriends’ lunch and champagne that night. White cake and bubbly are two of my favorite things, and they just say “party” to me. I didn’t feel great, but I was determined to greet the next year in my life with a glass in my hand and a smile on my face. Being surrounded by my best girls during the day and my family in the evening reminded me that life goes on and that while my recovery was hard, it was do-able, so take that, cancer.

A few days before my birthday, I strapped on as much determination as I could muster and took Macy to see Taylor Swift at the Toyota Center with her best bud, Ella, and my partner in crime, Jill. I was so afraid of being jostled by the crowd, as I was still pretty sore and healing was far from complete. But I wanted to be there and be a part of that big event, and to prove to myself that life doesn’t stop for cancer. I’d lost my breasts but not my drive. The glowsticks burned brightly as the music thumped, and I sat next to my favorite girl and soaked it all up. Every last drop.

Good thing I did, because my healing and happiness were short-lived.

Macy had just posted this on her chalkboard, and for all we knew, the worst was behind us and it could only improve from there. Hahahahahahahahahahahaha.

Just as I felt like I was really recovering from the mastectomy, the nosocomial infection entered my life. A curveball? And how.

Hospitalized for 9 days, pumped full of antibiotics, right tissue expander removed and left expander drained, my life took a decidedly unpleasant turn. It took 6 weeks to diagnose the mycobacterium, and nearly a month total of days spent in the hospital. That first 9-day stay was the longest of my hospitalizations, but also the scariest because the infection was hiding under the tissue expander, hard to diagnose but making me really, really sick. A month after the 9-day stay, I was back in the joint. Out for 3 days and back for 5 more days. Then, out for 2 weeks and back in for 3 days. A seemingly never-ending cycle. Each time I had to go back in, Macy would hand me Froggy, her most beloved of all her “crew” of stuffed animals. He’s been with her since she was a tiny baby and has enjoyed favored status among the masses of other stuffed animals. He’s been in her bed every night and has gone on every trip she’s taken, and she gave him to me to take on each trip to the hospital. He had a bath in hot, bleachy water with an extra rinse every time he came home to her.

She also gave me Baby Snoopy, another coveted member of the “crew,” and my  heart swells at the idea of my baby girl’s thoughtfulness. Though she hated to see me go back to the hospital, she knew her “crew” would comfort me in her absence.

Gross picture, yes, but I did make it smaller so you don’t have to see it in all its glory. Apologies to Christy, who hates this kind of stuff, and Julie: you’d better start skimming because this is the icky part. The aftermath of the mycobacterium is unpleasant, for sure. And this is not the worst shot there is; this shot was taken after much healing had occurred, believe it or not. The wound left behind by the infection was 5.6 cm long, 3 cm wide and 2 cm deep.  That dang bug wreaked a lot of havoc on my already-ravaged right chest wall, and it killed what little bit of healthy tissue was left after Dr Dempsey scooped most of it out to rid the cancer. It’s an insidious bug that is hard to treat. It’s not drug-resistant, like MRSA, but it is very slow-growing and so it responds slowly to antibiotics. Hence the long, long, looooooooong course of oral abx and the multiple rounds of  IV antibiotics, at home and in the hospital. I still have this collection on my kitchen counter, to take twice a day, but luckily haven’t needed the IV version since the last go-round in March. No idea when I’ll get off the oral abx, but sweet Dr Grimes, my infectious disease doc, has told me that he has patients who are on abx therapy for years. Years. Plural. Egads.

Trevor and I became fluent in home health care and learned how to administer the vancomycin and cefapim all by ourselves. The learning curve wasn’t steep, and the whole process was very systematic. My home health nurse, Chona, was as kind and competent as could be, but the gravitas of my situation was clear.While I dreaded it and resented the 3 hours it took twice a day to infuse, I counted my blessings and reminded myself that it could be worse: I could be getting those drugs via IV in the hospital. Again. Which is why I smiled for the camera, tethered yet again but happy to be at home, with Snoopy to keep me and my IV pole company. And yes, that is a glass of wine on the table next to me. It was a dark period in my life, people; don’t judge.

Remember Sucky, the wound vac? This photo is harder for me to look at than the one of the wound. Oh, how I hated Sucky. Necessary, yes, but hateful. And that’s all I’m going to say about that.

This is what Sucky’s appendage looked like strapped to my body, so it could suck out the gunk and speed the healing from this curveball. The size of the plastic sheeting and the tape required to keep the Sucky train rolling was big enough to give me the vapors, and my poor skin is shuddering at the memories right now. And isn’t everyone thankful that I didn’t have a better camera than the one on my iPhone? Imagine how gruesome the photos would be! Oh, the horror. 

The amount of supplies needed to deal with that wound was staggering. The home health stuff was delivered in big boxes, which cluttered up my office and dining room for a day or two before I said enough! and organized everything to minimize its presence. Out of sight, out of mind (sort of). I pared it down as much as I could.

I became proficient at prettying up the ugly truth of cancer treatment, and its equally- ugly friend,infection aftermath, fared the same. I may not have had control over the mutating cells in my body or the nasty bug that invited itself in post-mastectomy, but I sure could dictate how my surroundings would look during the after-party. 

The amount of supplies needed for this fragile existence was great, and so was my need for comfort. That I found comfort in bubbly and coconut cream pie should come as no surprise to anyone who knows me. I may have been down and out, with cancer and infection taking their pounds of flesh (literally), but I was powered by Piper and pie.

The summer wore on and I barely saw the sun. And only then, through the window; I didn’t get out much. Between the hospital stays, feeling puny, IV drugs, and being on guard against germs, I missed out on a lot.

I did make it to Macy’s 2nd grade last-day-of-school festivities. She had something funny to say when it was her turn to take the podium, and although I don’t recall what it was, I’m glad I was able to be there to see her in action. I also dragged my sorry carcass to Payton’s 5th grade farewell. My friends in high places in the school volunteering world pulled some strings and had a reserved seat for me, along with a parking cone to save a parking place for Mary, who carted me there and back. My baby was moving on to middle school, and I was moving slowly–very slowly–toward recovery, from cancer and infection. 

Right before school ended, Payton was honored with a spot on the All Star team. This boy lives & breathes baseball, and has from his earliest days, so this is a big deal.

The team went from District to Sectionals to State (or maybe Sectionals to District to State), and I made it to 1 game. Being in the hospital while my favorite player did that thing he does best was hard on this mama. His team had a lot of heart, in addition to some mad skills, and they were kind enough to play in my honor for the duration of their run toward State champs. I’ve never been more honored and humbled as when he came home from practice the night before the first tournament (District? Sectionals?) with a pair of pink sweatbands on his wrist. Learning that the entire team was wearing the pink, for me, moved me, and like the Grinch, my heart swelled to maybe a normal size. 

I’ll be forever indebted to all the other All Star moms who cheered for my boy and provided yard signs, pool parties, custom shirts, and child-wrangling assistance in my absence, at our home field and on the road. Missing the games was hard, but knowing that my circle of baseball moms had my back made it bearable. And having my signed photo of the boys in red (with a dash of pink) brightened my hospital room and my spirits. That frame now sits on my dresser, and every day when I see it I remember not only the special summer of baseball success but also the pure hearts of the families on that team who helped my own family in our time of need.

Good things can come from a bad situation. There is hope inside a diagnosis. You get a measure of the depth of people’s kindness, which comes out in lots of ways. Like custom cupcakes. I liked that one a lot, and so did my kids. 

Like a card signed by the staff at PF Chang’s during a celebratory lunch. Our waiter knew we were celebrating some good news in the cancer battle and took it upon himself to have his co-workers celebrate along with us. I said it then, and I’ll say it again: Eat at Chang’s!

My friend Paula from Duke ran in the Salt Lake City Race for the Cure in my honor and sent me her bib from the race. At that point, I was a long way from even considering doing a 5K, so it did my heart good to know she was out there, pounding the pavement among an army of pink and thinking of me.

One weekend in between hospital stays, Macy and I snuck away to Galveston with Christy and her daughter Alexis, for a much-needed break from illness, wound care, and calamities. Macy caught a huge fish off the dock, and seeing her proud smile made the trip even better. There’s something magical about the sunset off the water, and I savored the splendor.

Before the summer was over, we had the chance to puppy-sit this little beauty a couple of times. If puppy kisses can’t cure me, I don’t know what can! 

Once word got out that the puppy-sitting business was up & running, we got to keep Pepper for several days. My kids loved having her to snuggle with on the couch, and I relished the idea that the hard times were morphing into better times.

School started, much to my children’s chagrin, and Payton went off to middle school while Macy began 3rd grade. A few days after school started, I was fresh out of the hospital, she and I rocked out at the Jack Johnson concert in the Woodlands. Because I had been hospitalized, again, so recently, my attending the show wasn’t a sure thing. I still had the dressing on my port-a-cath and wasn’t feeling great.  What is a sure thing, however, is that I’m as stubborn as cancer is shitty, so I made it to the show. 

August and September were spent recuperating, and at the end of September I hobbled myself on down to Tootsies, a chichi clothing store in the high-rent district that was outfitting survivor models for the Couture for the Cause fashion show. I’d only been out of the hospital for a month, but I had committed to doing the show and I made good on my word. Scared breathless and unsure of myself are not states in which I commonly find myself, but the fashion show landed me smack dab in the middle of “What in the world am I doing?” territory. I wasn’t wild about the dresses I wore, but my shoes were a-maz-ing and the experience is one I truly will never forget. Oh, and we raised almost $100K for the cause. 

October signaled the return of some normalcy. I was able to put together something I’d daydreamed about a lot in the hospital: the First Annual Pink Party. I wanted to gather my circle of girls who had seen me and my family through the roughest part of the “cancer journey” to show my thanks and spend some non-sick time together. With the pink theme, yummy food (if I do say so myself), and plentiful drink, it was a smash success.

We seemed to have the infection under control and the antibiotics were doing their job, and after a much longer-than-anticipated hiatus, I was back on the tennis court. My sweet tennis friends gave me a little trophy that says “Winner,” and it’s the best trophy I’ve ever won. 

This little trophy soon had a friend, though, after Boss Lady and I won the Witches’ Open at the end of October. Being back on the court with my tennis friends was so great. Tennis is very good therapy.

As if that day wasn’t fun enough, that night was the Maroon 5 concert in the Woodlands. Tennis, then dinner and the show was a balm for my battered soul. We ate & drank then sang along with Adam for an unforgettable night.

Before too long, fall was upon us (or what passes for fall in Houston), and we readied ourselves for the holidays. Thanksgiving was spent with Team Cremer, with everyone contributing something to the feast. The kids worked off their meal with the traditional post-turkey swim. We had a lot for which to give thanks.

Christmas and the New Year came and went, and before I knew it was time to start making preparations for reconstruction. The Big Dig was a big step, and I had hoped it would signal the end to my “cancer journey” and allow me to put all that hardship behind me. Adding another doctor, and another Dr S, to my cast of characters could only mean one thing: I was going in for a very big surgery.

The DIEP procedure is amazing and hard, in a lot of ways: time consuming, intricate, detailed, and not infallible. Babying the newly transplanted skin, tissues, and blood vessels was hard work, and the crack team at Methodist in the med center did an outstanding job.

This is what I looked like before The Big Dig:

and this is what I looked like 3 days later, leaving the hospital:

It was a hard 3 days, no lie, but at least I was going home. One thing I would miss from the hospital was the morphine. Oh, how I love that stuff. I guess a lot of people do, too, because they guard it closely and I got a laugh from the ping-pong-paddle-key used to replenish my supply. Kinda reminded me of a gas station restroom key. 

One thing I would not miss from the hospital was this chair.

This was the chair in ICU that I had to hoist myself into, after hoisting myself and my 17-inch-long abdominal incision out of bed. Again, it’s a good thing I’m so stubborn, because it would have been easy to roll over, say this is too hard, too painful, too much. But by golly I was going to get out of that bed and into that chair no matter what, and with my morphine pump in hand, I did just that. I don’t think I cussed too much, either.

Recovery from The Big Dig is ongoing, and they say it will take a while longer. I’m not the most patient person, and I’m ready to have everything back to normal. Of course I know there’s a new normal, and it progresses at its own pace, not mine. It’s been a long, tough “journey,”and it seemed that everything that could go wrong did go wrong, for a while.

But a lot of good things have happened, too. I started blogging, for one, with Pedey at my side or in my chair, or both; who knew so many people were interested in my little “cancer journey?” It’s humbling and rewarding to see my “readership” grow, and I am immensely grateful for all the love and support that’s come my way. Someday I may have no cancer-related news to share. How weird will that be? I imagine I’ll find something to talk about in this space, nonetheless.

I will have more stories to share about my adventures with Dr S. There are a couple of revisions that he needs to make to his palette that is my newly constructed chest, and while we argue about the timeframe for that, it will likely provide blog fodder and laughs along the way.

One year ago, life took a decidedly unpleasant turn. Cancer entered my life like an afternoon storm along the Gulf Coast. 

And like the butterfly bush in my backyard that was uprooted and tossed around by high winds recently, I weathered the storm. I’m setting my roots and hoping that the winds that blow my way in future are calmer.

Like the pillow on my bed says, I am a survivor.


Preach it, GB Shaw

Editor’s Note: There’s a glitch on WordPress that is hiding my hard returns, so this is one long post without the usual breaks in text to give the eye a rest. Apologies.

“The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can’t find them, make them.”—  George Bernard Shaw

Love this quote. Love GB Shaw, too. Apparently he didn’t like the “George” and refused to use it, personally or professionally. That’s why I call him GB Shaw.

googleimages.com

He’d be a dapper looking fellow if he’d have done something about that mess of facial hair. I’ve never been a fan of the facial hair, on men or women. Just not my thing.
He certainly was accomplished, though. Born into a lower-middle-class family in Dublin in 1856, he certainly could have fallen by the wayside or become a failed corn merchant but successful drunk, like his daddy. It’s said that his daddy had a raging drinking problem and a serious squint (although not related, perhaps). Here’s a useless but interesting bit of trivia: Oscar Wilde’s father, a famous surgeon, tried to fix Mr Shaw’s squint, but failed. Either he wasn’t that great of a surgeon, or it was a truly serious squint. If only my Drs S could have gotten their hands on him. No telling how fine-looking he would have become after they worked their magic.
GB Shaw is noted as a playwright, and an accomplished one at that. He also dabbled in politics and reform for the masses. His Fabian Society tried to bring socialism to Great Britain but failed. The Society did eventually become the famed London School of Economics and led to the birth of the Labour Party. Neat, huh?
More importantly, he’s also a font of inspirational quotes, like the one above. After having several comments on my recent post about how ya just gotta “keep on keeping on” when going about this “cancer journey,” it got me thinking about how easy it would be to lie in a heap and say poor me. And I guess a lot of people do that. GB Shaw would be very disappointed.
Look, nobody wants a cancer diagnosis, whether it’s in the breast or the lung, the colon or the skin. I could write for days on the myriad ways having cancer wrecks your life, whether physically, emotionally, financially, or more likely all of the above. But once that pathologist confirms the malignancy and the doctor delivers the diagnosis, rolling over isn’t an option. Giving up and giving in doesn’t get the job done.
I haven’t been tempted to give up this week, but the thought did cross my mind as I found myself mired in nausea all week long. Sometimes this happens — I’m going along just fine, taking my antibiotics twice a day every day (for 254 days, but who’s counting) like a good girl, and wham! out of nowhere is the all-day morning sickness. I’m not doing anything differently, haven’t added any weird vegetables or roots to my meat-avoiding diet. Don’t lecture me about the beets; those are a mainstay and I like it that way. Don’t care if it grosses you out to see them on my plate–look away (Macy).
By no fault of my own, I’m suddenly hit with the kind of stomach upset that makes me think long and hard about the wisdom of carrying a barf bag in my purse. My sweet infectious disease doc is immune to my perennial question of how long will this drug therapy go on, and I don’t even ask him any more. Love ya, Dr Grimes. His nurse, Rhonda, gave me a glimmer of hope on the phone when she said he might knock the abx down to once a day, but alas no deal. Instead, he gave me a prescription for Zofran and said take that and eat some crackers.
So what’s a traveler on the “cancer journey” to do? Slog away, day after day. Put one foot in front of the other. Just keep swimming (Dory). Keep on keepin’ on. Just Do It. And any other clichéd truism you can think of. You do what you gotta do to get through the day, then get up and do it again. Some people also meditate. Some people pray. Some people fret. Some probably do a combination of the three. But you gotta do something. Inertia has no place along the “cancer journey.”

Journey

If you’re like me, once you read the title of this post, you’d end up with “Don’t Stop Believing” running through your head.

“Hold on to that feeeeeeeeling….”

Yes, we are simple creatures at times, and prone to even simpler suggestion.

As I wrap up the Napa series of blog posts, I reflect back on a fantastic trip, an outstanding weekend, and the kind of memories that would keep me warm on a cold winter’s night if I didn’t live along the Gulf Coast of the great state of Texas. Not that the memories aren’t that good, but that there’s little need for warming around here. Especially with my hot flashes. Thanks, early-induced menopause, because pre-summer in Houston isn’t steamy enough.

Thinking about the trip and preparing to say good-bye to our visitors from Boston today makes me a teensy bit sad. I don’t like transitions. I’m in for the long haul and can work long and hard at a steady pace, but I don’t care for the ups & downs, the twists & turns, the stops & starts. This sentiment applies, for me, whether we’re talking about vacation or illness. Going from my “normal” life to vacation mode takes me a little bit of time. Getting into the vacation frame of mind is a conscious shift for me, even when it’s a vacation I’m looking forward to. Having our friends from Boston here is most definitely something I look forward to, but it still requires me to make that shift in my head.

Now that our vacation with them is ending, I find myself again shifting, from the luxuryof sleeping in on a school day and spending the day by the pool, drinking early and often and into the evening; to hauling my carcass out of bed to pack the kids’ lunches, sign their folders, forge notes about their absences, and getting back to my normal life. I like my normal life, so this isn’t inherently a bad thing; it just required me to shift gears and change my  mind frame.

I’ve never been good at handling change, and that may be why I’m not a great traveler. I don’t like the idea of having to decide in advance what I’ll be wearing, and then pack it, taking care to not forget anything. It seems that once I get used to the new location, it’s about time to go home, and then there’s another adjustment to handle. I do it, and without the need for intervention, but it’s an effort.

That’s why this phrase spoke to me:

It was on the wall of the Cost Plus World Market in San Francisco near our hotel, where we popped into for supplies (and by supplies, yes, I do indeed mean champagne) our first night in California. We were at the checkout, clanking bottles and deciding whether to add chocolates to the purchase, when I saw this saying on the store wall. The other shoppers might have thought me a bit mad to be snapping a photo in the middle of a store, but I stopped caring about things like that a long time ago.

The saying spoke to me because I know that Lao Tzu is right.  He was a mythical figure in ancient China and is said to be the father of Taoism, so you know he’s smart. His ancient quote about the good traveler retains relevance today because people like me continue to buck the journey in favor of the destination. I know that it’s not about the destination, yet I can’t wait to get there. I will jump through all the requisite hoops along the journey in order to get to the destination, but for me, the destination is the goal. Wrong, I know, but still I persist.

Some say that dealing with cancer gives you greater clarity on “the things that really matter.” Or that having survived cancer, you become more aware of and grateful for the things around you. Then there are the idiot-balls who say that cancer is a gift. To them, I say choke off. This is no gift. Yes, it does afford the opportunity to re-evaluate priorities and habits, but it’s no gift.

I spend a lot of time in my personal “cancer journey” marking off time and accumulating milestones. Maybe that’s a coping mechanism, I don’t know. I do know that I can tell you to the day how long I’ve been on oral antibiotics (251 days), and how long it’s been since The Big Dig (49 days). More likely, it’s because I’m focused on the destination and not the journey. I can’t wait to “be done” with this cancer business: the disease itself, the surgeries, the recoveries, the uncertainty, and the drug therapies. I don’t aspire to ever be free of the worry that the cancer business drops on my doorstep like an unexpected and oversized parcel. It will always be there, in the back of my mind. I liken it to the childhood sensation of rolling your tongue through the newly-created hole of a lost tooth. Your brain knows the tooth is gone, but your tongue can’t resist checking for sure, by sliding through that narrow, slippery, and slightly nauseating space. My brain knows my cancer is gone, yet it can’t resist double-checking.

I refuse to live in fear, however. I don’t want to have any regrets: about life in general, and certainly not in this “cancer journey.” Each decision I’ve made along this “journey” has been nitpicked and examined half to death, with risk and reward calculated to within an inch of their lives. Some decisions have been difficult, and some have been easy, but none have come without a lot of thought.

I heard from a fellow breast cancer blogger who is dealing with an infection, possibly of her tissue expander, just as I did. She’s on IV Vancomycin, like I have been many times. I commented on her blog to tell her that the Vanc works and it will cure her, hoping to offer some support. She replied that she can’t imagine how I endured that process multiple times because it’s so stressful. Yes, it is. No doubt there. And if someone were to ask me how I endured it, I don’t know that I would have an answer. I don’t know how I got through it, other than I just did it. Just gritted my teeth, tucked my head and did it. Because I didn’t see any other choice. Saying “I can’t” wasn’t going to make it go away.

I do like to make myself focus on good things, or to “walk on the sunny side of the street” (thanks, Mom!). Yesterday I wasn’t feeling well, for the 3rd day in a row, and was a little put-out that my “cancer journey” was once again interfering in my fun. I wanted to visit and eat & drink with my friends who were in town, but instead I had to lay down and take a nap. Take a nap. In the middle of the day, and in the middle of my friends’ visit. That made me grumpy, and I was just starting to think about getting out the pity-party supplies.

Then I told myself to shut the hell up, get in the shower and get on with the day. There was dinner to prepare for our last night together and 3 bottles of bubbly in the fridge, so there was no time for a pity party.

While in the shower, I was wondering why the hell my belly incision is still so tight and sore after 48 days, and when in the sam hell it’s ever going to heal all the way so I can take a shower like a normal person, without wincing as I lather, rinse & repeat, and just be done with it.

Then I realized: I AM taking a shower like a normal person. There were no JP drains to deal with. There were no holes in the side of my body to keep dry. There was no dressing over the accessed port-a-cath that had to be kept dry. 

When my port is accessed, i.e., has a butterfly needle piercing my skin and the port to deliver medicine, it has to be covered to keep it sterile. The port itself is smaller than a quarter, and the butterfly needle (while really thick) doesn’t extend the area. Yet the whole thing has to be covered with this giant dressing. That’s it above, stuck to my clavicle, shoulder, and neck area. My skin hates these dressing with a passion. The sticky tape irritates my skin as much as Sarah Palin irritates me. After I peel the dressing off, there remains a red, raised outline in the exact size & shape of the dressing.

And yet, I’m sans dressing. That’s a bright side, a good thing to be tallied and counted. I’m also sans sling bag. Not having the JP drains means I don’t have to wear the sling bag, cute as it may be, 24/7. That’s another bright side, and a very good thing.

Yep, it’s cute, and it served a wonderful purpose, and I love my runnin’ buddy for getting it for me. Being able to camouflage the drains by stuffing them in the sling bag, then hide the protruding rubber tubing by the cross-body bag, gave me freedom and kept me from being house-bound.

There’s nothing in there — look, Ma, no drains!! — and that is a reason to celebrate. I’m no longer tethered to plastic bomb-shaped udders collecting all manner of gross stuff, fluid and solid, that my battered body is shedding after yet another major trauma. I don’t have to plan my very limited wardrobe around the bright orange pattern anymore, but now I can do that just because I want to.

I will always be grateful to the sling bag for carrying my drains, and my drugs, in such style. The clear plastic compartment in the inside front is not likely designed for slipping in the essential few pills, but it sure worked well for me. I’ve heard that some people keep their driver’s license there instead. How weird is that?! Instead of my TX ID, featured here are my constant companions Bactrim & Minocycline, the antibiotics for the post-mastectomy infection; a muscle relaxer for the super-tight 17-inch belly incision; and a Xanax for any and all calamities, just in case.

So while this “cancer journey” is far from a gift and certainly does suck, I can still “walk on the sunny side of the street,” look on the bright side, and find moments of goodness contained within as I move forward, always searching for the finish line.

This signpost, sent to me by Jill in the Oakland airport en route from Napa back home, is a good mile marker in my journey. I love that my friends see bubbly-related things and think of me, and I love that no matter where this journey takes me, I’ll have great friends, a sassy sling bag, and plenty of bubbly for the ride.


Saturday in Napa

Yes, I know we’ve been home a week already, but I needed to think about how to best convey the utter perfection of our second day in Napa, and these things take time to percolate. Plus, the hustle & bustle of real life intervened, so there’s been a mountain of laundry, baseball games, homework, and errands aplenty since our return from the Golden State. Then there were some humorous interruptions, like Payton’s poker face (or utter lack thereof) and a couple of doctor appointments forcing themselves to the head of the blogging queue. Couple all of that with the arrival of our dear friends from Boston for their semi-annual visit, and you get a better idea of why this little blog has been neglected. Never fear, it is back to business now.

I’m not quite ready to let go of the Napa trip. So much of what I blog about is yucky stuff–cancer, infection, surgeries, drug therapy, and assorted pain & suffering–so when I have a lovely topic, like a trip to Napa, I’m gonna milk it for all its worth. Then maybe milk it some more.

If I still write about the trip and continue to post pictures, it lives on in the forefront of my memory and isn’t yet consigned to the dusty, slideshow status of trips gone by, and it doesn’t quite get crowded out by the workaday stuff that has to get done around here to keep this household running. Our long weekend in Napa to celebrate one of my BFF’s entries into the “Over 40 Club” was the stuff that legends are made of (at least in my mind). It was a celebration of Yvonne’s 40 years on this Earth, and for me, a smaller celebration of life finally, at long last, returning to some semblance of normal after a long, unpleasant, bumpy ride.

Which brings us to Saturday, Day Two in Napa. Friday, Day One in Napa, had been what I thought was the perfect day in Wine Country, but Saturday was even better.

Before I get into the nitty-gritty details, let me share two of my favorite photos from the preceding days. This one  is from Thursday afternoon at the Franciscan in San Francisco, before we left the Bay City for Wine Country. It’s a fave because The Birthday Girl had arrived to start the party-filled weekend, because we’re surrounded by great wine & yummy food, and because it was a harbinger of all the fun times to come. We were still waiting on the rest of our crew to arrive, but we went ahead and got the party started.

This was at Silver Oak on Friday, where we met the infamous Walter, who will live forever in our memories of Napa. In fact, if I recall correctly, the infamous Walter took this very photo. Just after this photo, we moved on from Silver Oak to Quintessa, and the day just kept getting better and better.

But back to Saturday. The day began with mimosas and a bloody mary to toast The Birthday Girl at breakfast. I mentioned before that this was the best-ever bloody mary, and I stand by that claim. Wish I had one right now. But I’m drying out, so that would be inappropriate.

After breakfast Saturday morning, we grabbed to-go cups and hustled outside to meet our ride and the rest of our merry party. While these aren’t exactly Texas-sized to-go cups (or “roaders” as we like to call a drink on the go), they certainly were tasty and really, who needs a Big Gulp when you’re off to taste a hundred wines in one of the best places on Earth? As delicious and festive as those bloody marys were, I’m glad I wasn’t confronted with the dilemma of having a refill to say no to; that would have been tricky.

We were off to Quixote, my favorite of all the wineries we visited. Suffice to say that if our trip had ended after the visit to Quixote, I would have been satisfied. The fact that it didn’t was icing on the cake. Or an extra olive in the bloody mary. I will write about Quixote soon; need to sort through the photos and do it justice. For now, know that it was phenomenal in every way.

None of us really wanted to leave Quixote, and once we were ready to shove off, we were delayed a bit while our driver borrowed a toolbox from Quixote to remove the limo seats to retrieve a fallen iPad. Once that was done and we packed into the car, we headed to Mumm, on the suggestion of Robert, our tour guide at Quixote. He did not lead us astray. Like all of the wineries we visited, Mumm is gorgeous. Stunning views and beautiful flowers everywhere. And the champagne–did I mention that? My favorite drink, being produced in plentitude. Ahhhh. Happy girl.

We hadn’t scheduled an appointment, and Mumm was bustling and busy on that beautiful Saturday, so we each ordered a glass off the tasting menu and strolled the grounds.I’m not sure where I was in this shot, but hopefully I had a glass in my  hand. I might have been in the restroom, checking out the great quotes on the walls, like this one from Bette Davis:

And this one from economist John Maynard Keynes:

Or I might have been mesmerized by this display in the gift shop:

Also in the gift shop was a small shrine to Carlos Santana, who we had seen the previous day at Silver Oak. He’s a regular around there, and Mumm had a signed guitar, a couple pieces of Santana-inspired artwork, and his own vintage of bubbly.

The patio at Mumm was beautiful, overlooking the vista of the vineyard. The weather was perfect, with blue skies, abundant sunshine, and cool breezes. 

There’s also a small art gallery at Mumm, with rotating exhibits. The day we were there it featured black & white photos of “then & now” shots of all sorts of people. Siblings as kids then as grown-ups. Mamas holding babies, then grandmas holding their generation’s next generation. Cool.

After Mumm, we headed back to V Sattui for picnic provisions and ate a quick lunch before our appointment at Stag’s Leap.

The wines at Stag’s Leap were not my favorite. In fact, of the 7 tastings they poured, I didn’t finish any of them. It was still a lot of fun, and being in the tasting room while the rest of the visitors milled around the common area was nice. We had a place to sit while we dissected the wine, and a chance to catch our breath before moving on. 

With our visits to Quixote, Mumm, and Stag’s Leap, we were done with tastings for the day and headed back to our hotels to get ready for dinner at Bottega. Just in case the day hadn’t been perfect enough, we still had a fantastic dinner to look forward to. Rest assured that dinner lived up to its expectations. Being at the chef’s table toasting The Birthday Girl with wines chosen from our tour will forever be one of my all-time favorite things.

The day was indeed perfect. Every bit of it was just plain perfect. Each winery we visited offered something different, and while Quixote was my favorite, by a lot, I enjoyed the others, too. And as if the wine wasn’t good enough, there was the uninterrupted time with great friends, gorgeous scenery and beautiful weather, and for me, freedom from cancer and its messy aftermath. Now that’s a great day.


2 small heart attacks

The viewer mail is pouring in about this post and this one, in which I inadvertently gave y’all some reason to think you might be suffering a small heart attack. Many apologies. I didn’t mean to scare anyone or cause anyone to stroke out. I promise to be much more boring and much less dramatic in future.

Yeah, right.

I will get to coverage of Day 2 in Napa, really I will. It’s in the works. The trip was so fantastic, I want to do it justice, and sometimes that means ruminating, and you know I have very little patience.

thank you, AA Milne

As Winnie the Pooh referred to himself as “a bear of very little brain,” I am the blogger of very little patience. Working on it, people, working on it.

Thinking about Winnie the Pooh reminded me of how much I loved that bear as a little girl, and I’m sure somewhere in the deep recesses of my parents’ attic, there are photos of me surrounded by Winnie; my sweet mama never threw anything away. I had the Pooh treehouse with all the little figures: Pooh, Piglet, Rabbit, Christopher Robin, Kanga, and Roo. Oh, and Tigger. Don’t forget him. He’s c-razy! I had some Pooh pajamas that I wore nonstop, although not out in public like my little girl does in her jammies. I had a stuffed pooh, the original AA Milne version before Disney got its hands on him, and that bear went everywhere with me. I loved him so much I even gave him open heart surgery with my mom’s seam ripper from her sewing kit. I must have left the closing to my surgical assistant, because Pooh had a hole in his chest for the rest of time.

google images

Now that I’m all grown up, I appreciate Winnie the Pooh on a whole ‘nother level, and find the depth and meaning contained in his quotes so moving.

We’ve all seen this one, on a greeting card perhaps or a t-shirt: ““If you live to be 100, I hope I live to be 100 minus 1 day, so I never have to live without you.” So endearing when said by a cartoon bear, but if a human said that I’d want to barf. Those of you who know what a non-romantic I am will be shaking your heads right now. Go ahead, it’s all right.

This quote from Pooh’s endless wisdom does not make me want to barf, however:

AA Milne

This one is all right with me. Don’t know why, but I suspect it’s because it reminds me of my sweet mama, and how very much I miss her. It also reminds me of my favorite ee cummings poem “i carry your heart with me,” which I had planned to read at my mom’s funeral but I just couldn’t get the words out. The words are always in my head, though, and I especially like this part:

“i carry your heart with me (i carry it in my heart) i am never without it… you are whatever a moon has always meant and whatever a sun will always sing is you here is the deepest secret nobody knows (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows higher than soul can hope or mind can hide)and this is the wonder that’s keeping the stars apart i carry your heart (i carry it in my heart)”

I’ve always loved ee cummings’s disregard for capitalization and punctuation. To me it means the words themselves and the ideas they express are way more important than conventions. It’s as if he was in such a hurry to get these thoughts out of his head and his heart and onto the page that he couldn’t be bothered stopping for things that typically  make it easier for the reader to understand what’s been written. None of that mattered. He liked to present new ways to look at reality.

His romantic transcendentalism was not popular, however, and although he was the son of a well-known Cambridge family (his dad taught at Harvard and later was minister of Boston’s Old South Church), he struggled to get his poems published. His mom, Rebecca, had encouraged his love of writing, and lucky for the rest of the world, he persevered. It’s shocking to think that for some 20 years, he had to pay someone to publish his poems.

His poem reminds me to carry my sweet mama in my heart, just like Pooh suggests. But the root of the root and the bud of the bud is that it’s not the same as having her here. And as sweet as the words of cummings and Pooh are, they also lead me to the uncomfortable thought process through which every young cancer patient goes, whether we want to or not. The one in which we wonder about our mortality, as rates of recurrence, treatment pros & cons, and survival statistics tumble through our heads. For every success story we hear, we know there is someone who lost their battle, and we’re acutely aware of the new diagnoses that crash into ordinary people’s well-ordered lives every single day.

Having cancer sucks, but having cancer while you still have young kids at home really sucks. There’s the day-to-day junk that still needs to be dealt with, despite the gravity of disease, treatment, hospital stays, and ongoing drug therapy. I guess it’s not surprising that I find myself not really caring about whether I sign Macy’s daily folder, or wanting to punch the teachers who think another parent-driven school project is in order. Simmer down, teachers; I won’t really punch you but when you assign projects that my child cannot reasonably complete on her own, I do think about it, briefly, because it’s hard to muster the emotional energy needed to guide my child in her education, and I sure don’t want to have to make a trip to Hobby Lobby for supplies.

There’s a never-ending juggling act that comes with the cancer territory when young kids are involved. Like the fact that most of my doctor’s appointments are with surgeons, who tend to do surgery in the mornings and see patients in the afternoon. Sometimes that means I’m cutting it close when seeing the doctor and taking care of business while still making it in time to pick up the kids from school.

Like the fact that I never know when this beast will rear its ugly head again and interfere with our daily life, plans, and schedules. Payton’s Little League season is halfway over, maybe more, and I’ve yet to make it to a single game. For the first time in his Little League “career,” he’s played games for which neither of his parents was in the stands. Not the end of the world, by any stretch, and he’s a pretty resilient kid, but it still bugs me.

Like the fact that sometimes when my kids are venting to me about whatever problem is foremost in their minds, and all I can think is, “It’s not so bad…at least you aren’t dealing with the aftermath of cancer.”

But then I smarten up and realize that yes, they are dealing with the aftermath of cancer. It’s there for them, too, even though they don’t talk about it much or worry about it like I do. It comes out sideways, sometimes, like in Macy’s “getting to know you” questionnaire from the first day of school this year, and her answer to the question “What scares you the most?” Her answer: That my mom will get another infection. Geez, what happened to monsters under the bed? We’ve eclipsed that childhood fear and have sped headlong into unchartered territory here. Like Payton asking us about the annual summer trip to Boston and Salisbury Beach, and wondering if all of us will be going this year. Since I missed it last year, I want to be there even more this year, but part of me hesitates in promising him that, because with this damn disease and this damn infection, I just don’t know. I’m operating under the assumption that the answer is yes, we’re all going this year. But I shy away from promising it.


Breaking news

We interrupt the “All Napa, All the Time” marathon with breaking news. Imagine the tornado sirens going off right now (or maybe that’s just in my head). If you’re looking for news of Day 2 of our recent Napa adventure, you’re gonna have to wait.

Yesterday I did something I haven’t been able to do since The Big Dig. I’m very excited about it. It’s been 5 weeks since the excavation that gutted me like a fish in an effort to restore my post-mastectomy sunken chest. 5 long weeks. There are lots of things I’ve been unable to do, and y’all know I’m a very impatient patient. I tend to rush things and push the envelope, and sometimes that results in a set-back, or at the very least, a lot of frustration for my handlers. I’ve been trying, really trying, to be patient, to not rush things, and to avoid any potential set-backs. I’m not much of a people-pleaser by nature, but I do try to keep my handlers happy. They make a lot of noise when they’re unhappy with me.

I rode my bike.

chumpyclipart.com

Yes, that’s the breaking news.

Hope you were sitting down, because it’s really big news.

See, I’m one of those weirdos who loves to exercise. I’m restless and have a strong “productivity” drive. Like how some dogs have a high food drive, or our crazy dog Harry has a high “must have something to carry in my mouth” drive, I have a high “productivity” drive. I also like to eat. And drink. But don’t like when my clothes don’t fit, a wonky equation to say the least. Some people don’t care much about food, and I don’t understand them. I’m usually planning my next meal as I’m eating the current one. Different strokes, people.

I’ve mentioned before in this space that I’m not good at lying around, being lazy, and doing that thing called relaxing. What is this practice of which people speak? Apparently I missed the memo, because I’m no good at it.

All this to say that being grounded for the last 5 weeks has been hard for me. I’ve really missed my daily exercise. Whether it’s tennis, the gym, or riding my bike, I miss it. And yesterday, I rode my bike.

Glory be!

Macy and I have a routine of riding to the pet store every day after school to buy crickets for Cincko, her leopard gecko. He’s got a big appetite, and I’m always afraid he’ll start banging on the sides of his tank if he doesn’t get fed. He eyeballs Pedey, our little dog, and puffs himself up as if he’s going to attack that dog the way he pummels the crickets who are dropped into his tank. Thus, the need to procure crickets is a big one, and I haven’t been able to ride with her since my surgery.

Yesterday after dinner, she wanted to go for a ride. Not to the pet store, but just around the neighborhood. After proving to myself and my handlers that I could keep up in Napa last weekend, I felt good about giving it a try. I told Macy I’d do a lap down the driveway and see how it felt. A test run, of sorts. If it didn’t feel good, I’d concede. She reminded me not to push it, that we could wait until I was more healed. That child knows her mama well.

cardcow.com

The test run down the driveway felt fine. Felt better than fine: it felt awesome. Other than a little tightness across my abdominal incision, it felt like old times. It’s true that you never forget how to ride a bike, and my muscles remembered how to fire their pistons to propel me forward. I wanted to get down on my knees right there in the driveway to thank the great gods of healing for bestowing their kindness upon my beleagured and battered body. But that would have caused Macy to roll her eyes at me and say that I’m embarrassing her, again, so I refrained.

Instead, we made a 2-mile circle around our neighborhood, dodging pedestrians, watching for bumps in the road, and intentionally riding through sprinklers. We enjoyed the drier-than-normal Houston air and rejoiced in the birdsong. We admired the neighbors’ yard work and  noticed how lush and green everything is in our part of the world.

It was a very good ride.

bicyclingabout.com

Ok, this is the part that my handlers should skip over. Y’all don’t want to read this; I worry about your blood pressure.

As I reflected this morning on yesterday’s ride and conducted my mental inventory of how much my various hotspots hurt, I realized that they didn’t really hurt. Not any more than usual. Maybe I really am healing after all. Finally!

Satisfied, I ran through my workout options for today: I could ride my bike again, I could take Harry for a long walk, I could go to the gym for cardio or for strength training. Then I realized that it’s Tuesday. It’s tennis drill day. I haven’t drilled with my team in 5 weeks. I could go to drill! Yes, I could go to drill. I may have to dust off my racquet, but I could go to drill.

Ok,  handlers, you can start reading again.

Then I realized that I’d better settle down. I’d better take it easy. I’d better ease into it and not go head-long, full-speed into resuming my normal life.

Maybe next Tuesday.


Ithaka

How appropriate after yesterday’s post that the first thing I read today is an excerpt from the poem “Ithaka” by Constatin Cavafy. Remember that yesterday’s post contained a photo depicting my personal vision of paradise? Guess what Ithaka looks like?

Also appropriate is that Amy Hoover showed up on my doorstep last night with a real-life superhero cape, which I clearly need to continue this “journey.” She doesn’t need a cape, because she really is a superhero, but her youngest son, Carter, has one and was sweet enough to loan it to me. We’re changing the C for Carter to C for Cancer-killer. I love the cape.

I’ve been struggling with the “journey” part of my recovery from major reconstruction surgery. I’m not a journey kind of girl; I’m all about the destination. Don’t care how we get there, it’s the getting there that matters to me.

Well, guess what? On a “cancer journey” you’re never “there” and the idea of being “done” is laughable because there really is no end point. There are transitions and transformations, and at some point one does graduate from cancer patient to cancer survivor, but there aren’t any signposts or mile markers along the way, so hell if I know where I am in this whole journey. I can say that so far, to quote the Grateful Dead, “What a long, strange trip it’s been.”

Enter Constantin Cavafy. Fellow Greek, also a wordsmith (although he was way, way better at the craft than I). He was born and died on the same day, April 29 (1863-1933). I must say, that’s a terrible way to celebrate a birthday; I hope he got a piece of cake before he croaked. I also think it’s terrible, although understandable, that his family chose to Americanize their surname, Kavafis. My dad’s dad came over from “the Old Country,” as the Greeks refer to the homeland, speaking no English with very little money, like millions of other immigrants. Once he settled and raised his family, he wanted them to be Americanized, to shake off the immigrant stink that was considered unsavory, even though the USA is purported to be a melting pot. Thankfully, my Papou did not Americanize our surname, although my dad did change the spelling slightly in 8th grade, from Katopodis to Katapodis, to make it easier for the sports announcers to pronounce it properly; Kat-uh-po-dus instead of Ka-top-uh-dus. True story.

So Kavafis becomes Cavafy, and Constantin writes some poetry. He published more than 150 poems, the most well-known, “Ithaka,” after he turned 40. Some might say he’s a late bloomer, but those of us in the over-40 crowd say, Giddyup.

“Ithaka” was written in 1894, revised in 1910, published in 1911 then published in English in 1924. Talk about a journey: 16 years to complete, then another 13 years to reach a wide audience. I hope Constantin was more patient than I am. I’m sure glad he had a few good years between the poem’s success and his death, and I hope he savored it.

Some believe that the subject of “Ithaka” is Odysseus, from Homer’s epic poem The Odyssey. I think, however, it applies to anyone who is on a journey, and although Ithaka was the finish line or end point for Odysseus, the location is superceded by the ideal.

“Ithaka” begins with some advice for the traveler, which I think applies to lots of journeys (although on my particular journey I don’t have to “hope the voyage is a long one” because it is, boy howdy it is).

As you set out for Ithaka
hope the voyage is a long one,
full of adventure, full of discovery.
Laistrygonians and Cyclops,
angry Poseidon—don’t be afraid of them:
you’ll never find things like that on your way
as long as you keep your thoughts raised high,
as long as a rare excitement
stirs your spirit and your body.

Well, I certainly have encountered my share of Laistrygonians, Cyclops and angry Poseidons in this “cancer journey.” While Cavafy referenced these giants (cannibals, one-eyed monsters, and the God of the Sea, respectively), I believe such bad-boys take numerous forms and can also be representative of disease, infection, and hardship.

Ok, so far my voyage has indeed been long, with what some would consider adventure and discovery, and full of bad guys, and I honestly haven’t been afraid of them. Frustrated by and utterly sick of them, yes, but not afraid. So far so good.

I’ve tried to keep my thoughts raised high, and thanks to my mom’s “walk on the sunny side of the street” schooling, I think I’ve done that. Sure there have been some bad days, but I’m not going to sit around asking, Why me? when it really doesn’t matter, and it certainly doesn’t change anything.

I can’t say that I have a “rare excitement” stirring my spirit and body, although maybe I did while on morphine. More likely it was while on Versed. That’s one of my favorites; such a happy place.

“Ithaka” goes on to extol the pleasure of steaming into unseen harbors on a summer morning to “buy fine things” and “gather knowledge from their scholars.” Hmmm, exploring, shopping, and learning: now that sounds like my kind of trip. Cavafy implores us to keep Ithaka always in our mind and to remember that “arriving there is what you are destined for.”

Now here’s the part that really speaks to me today, as I continue to struggle with the down-time of recovery, as I want to be “back to normal” and wait impatiently for the passage of time and the reaching of milestones that will prove that it is so.

But do not hurry the journey at all.
Better if it lasts for years,
so you are old by the time you reach the island,
wealthy with all you have gained on the way.

I have a problem with the idea of the journey lasting for years, even though I know that it’s reality. I can accept it, but I don’t have to like it. I do hope that I am indeed old by the time I reach the island, and I already feel wealthy with all I have gained on the way.



This is Kayte, not Trevor

Hi Pink Underbellyers,

This is Kayte VanScoy posting under Trevor’s PU log in. I wonder if Nancy’s ever given a thought to the fact that her blog is peee-yewwwwwww. For sure, the “Cancer Journey” (cue the violins) has been, so why not.

I’m in town imposing on the unending hospitality of the Hickses. I’ve known Trevor, Nancy, and Ed, because, let’s face it, Ed is part of this constellation too, since 1997 or so when we were all friends through the Austin Chronicle–Holt, Rinehart axis in Austin’s writing and editorial community. Eventually, Ed moved in and became my roommate, and that’s how I get so lucky to be able to pretend that I’m family around here. The truth is, we lost touch when I moved to New York to become rich and famous (I’m still waiting). But enough about me. Seriously. Enough about me already this week. (At first I wrote “weekend,” but then I realized that other people are working as I type this; it just always seems like the weekend around here.)

Hanging out with Nancy and Trevor and their kids and Ed and the dogs and Amy Hoover, too, who is a force of nature, makes it seem like life, no matter what comes, is just one pool party away from working out for the best. Look, PU-ers, I’m not going to lie. This has been a really rough couple of days for me. I didn’t exactly plan it that way, but I brought some heartbreak to Houston with me. Because, you know, it’s always all about me. Right? Does someone have a surgery to recover from around here? Is someone dealing with their wife and mother being not at 100%, when she’s usually at 150%? Apparently, I don’t care. Me me me. Sob sob sob.

Nancy makes it seem like my troubles are as big as anyone’s, including hers. And then…. I go to her appointment with Dr. S today.

Now, I’ll just stop here and say that when Nancy and Trevor and I reconnected on Facebook, we had been out of touch for many years. They had moved to NC and back, had another baby, and moved away and back to the Houston area. We had only been blissfully (for me, anyway) back in touch for a few weeks when Nancy got her diagnosis.

You never know how you’re going to react to something, but for me Nancy’s illness has made me realize how much I value my friends, how life is short, how old we really all are now… really, lots of really profound stuff. Maybe it’s been like that for you, too. It makes you think and try to see if you can pull something better up out of the middle of yourself. Those are always good challenges to have… right? I guess so. Whatever. Life.

Anyway, I offered to “help” Nancy and basically invited myself to town. So far, my “help” has looked like me staying out till 5am with other people, waking the whole house up, napping, hungover, through the day, then drinking champagne in her hot tub. You’re welcome! No, really, it’s nothing. I’ll try to do the dishes tonight… ? I guess I’m just not one of those “helping” people.

Now. Amy Hoover. That’s another story. Let me tell you… that’s a whoooole other story. Talk about Wonder Woman. I would give anything to have a heart big enough to contain other people’s needs. I’m happy to meet someone so competent, focused, giving, and living in love. Reminds me what is possible when we ask more of ourselves.

All right. I’ll get to it now. Here’s the story part of the blog: so, here we go… me, Nancy, and Amy, off to Dr. S’s for Nancy’s seeming daily appointment.

Okay… hi again. I saved this yesterday evening so that we could all sit by the pool and talk and eat and visit. This scene is pretty good, you guys. Pooltastic.

Now. Getting back to Nancy, her appointment(s), and Dr. S: Listen, if you have not been so privileged as to be invited into the presence of Dr. S, please endeavor to procure an audience with His High Holiness, the Plastic Surgeon’s Plastic Surgeon. And, you know, no joke, the man is more than skilled. He is more than artful. He is OBSESSED. He is the Picasso of the female form. Which is also another way of saying: Nancy looks amazing. She is in very good—and very specific—hands.

Now that’s just the intro. That’s the nice way of easing you into the jarring reality of Nancy’s daily life. When I was here last summer, Nancy was still battling her infection and still coping with an unreconstructed, post-surgical mastectomy site. I can’t really describe what it was like to see the Amazing and Beautiful Nancy in so much pain. It wasn’t comfortable to see. And then she invited me into her bedroom—with Amy Hoover—to observe the changing out of her wound dressing and, I don’t know what you call it but for lack of a better term, wound stuffing. The generosity of this invitation… I cannot overstate it. It was deeply moving, as much as it was unsettling. She even, and seemingly without thinking about it, invited in my friend Sarah, whom she had never even met, to watch the procedure. I don’t know why she did, but of course I was curious. I didn’t know that Sarah would want to but (and her dad is also a plastic surgeon, so perhaps it’s just a natural, genetic inclination) of course she was curious too. I realized, then, that Nancy was so much more than my old, smart, sweet, sassy, challenging, gorgeous friend from Austin. She is someone who does not see her body as only her own. She is so generous that she understands that to share her journey with me and with Sarah (and with all of you through this blog) is to expand and extend the boundaries of those who are ready to cope with their own cancers or the cancers of their friends, to grow the pool of people who will have a driving need to see research and fundraising get pushed to their limits as fast as possible. Although this journey, and her body, are certainly her own, Nancy is strong enough inside of herself to not feel stingy about her experience. I know that I could never offer as much to the world and she simply floors me. I am in awe of her and forever in her debt for inviting me in. My world is permanently changed.

Which brings us, finally, to the examination chamber of the ebullient Dr. S. His examination table more throne than bed, a leather club chair for me to lounge in, a rolling stool for Amy, and Nancy perched at the ready for what she calls, not unfittingly, The Dr. S Show. And in he comes, fanfare root-a-tooting, a fit and attractive man with dark skin, of some Middle Eastern or Asian descent. But who has time to ask after such trivialities as background? He blazes in and begins the performance, and Nancy—the Judy to his Punch, the Lucy to his Desi, the cream to his coffee—giving it back every step of the way.

First, down come the clothes and there is Nancy’s body in its glory, stripped to the hips. Now, I’m not a prudish sort, but from the unconcerned way in which she peeled off her kit you’d think her profession involved a pole or the transportation of chicken wings from kitchen to salivating male maws. I guess she’s used to it. She didn’t seem impressed. He, on the other hand, lit up. Not in a yucky way, but in the way of an artist unveiling his greatest work of art—behold, Nancy!

Like the cartoon painter, holding out his thumb to measure his progress, he stood back to take her in, stepped forward to touch, prod, palpate, and even just to elucidate. It was the longest, by far, that I’ve ever been in a room with a half-naked person and  three dressed people having a conversation as if, you know, it just happened every single day of our lives like that. Of course, I was the only one there for whom it doesn’t. So, I mostly kept my big mouth shut and tried to take it all in.

First, there was the issue at hand. The Soup du Jour was the “divot,” as Nancy had come to call a thumbprint-sized indentation of her upper-right, newly reconstructed breast that had just drooped into existence in the past 24 hours, along with some new and concerning pain. This was the exact site of the infection that had so bedeviled her and she was worried it was all coming back.

Right off the bat, with the most self-assured manner imaginable (imagine Justin Timberlake meets Arnold Schwarzenegger with just a soupcon of Karl Lagerfeld), Dr S announces that this is nothing to worry about, there is no infection present, and that everything looks amazing. This indentation can be filled with injected fat, or they could go back in and fix it in another surgery.

Is he serious? Another surgery. He’s blasé. She is too. The explanation for it, he says, is simple. One of her ribs had to be carved out to allow a blood vessel to pass through, to supply her new tissue. I shudder at the carving motion he makes in his finger, showing how the rib was sliced into with a crescent moon. Again, this registers almost zero with Nancy & Amy and I keep my yapper zipped.

Now, in a regular doctor’s visit, Nancy would cover up as soon as possible, he would busy himself with scribbling something and mumble his way out of the room. You know how it goes. Right away, however, and Nancy seems to understand his need to do this, he begins to survey “the field,” as it were. Nancy has a hip-to-hip incision with two drains on either end. This is where The Dr. S’es harvested the fat she had so obligingly grown for them to build her new breasts.

He sways over to the paper towel roll on the wall, whips out a square of paper, takes out a Sharpie and begins to diagram the procedure. Nancy is rapt and I figure she knows what he’s talking about. Later, we both confirm that we were lost in all the medical jargon. I’m confident that Dr. S has no idea what’s going on with his audience and is even less interested. He continues on, diagramming, explaining, gesticulating. Finally he announces, “Now I do not even give this lecture to other surgeons!” Nancy, Amy, and I break out in a round of (bewildered) applause.

Unfortunately for Nancy and, one would think, the future of all mankind (given the intensity of his passion around it), two weeks post-surgery Nancy still hasn’t lost every single nubbin of extra fat globules from her hips beyond the incision. This cannot stand!

I can fix this! he quips, gesturing dismissively to the offending blobs. “We call these dog ears.” I put this in quotes so that you will understand that Yes, He Actually Said That. Nancy is NAKED, SCARRED, RECOVERING… but, dog ears. THIS is our priority. My mouth snapped open and didn’t close for several minutes. He wasn’t done. And this, he sweeps his hand up her side a bit–not touching her, but seemingly carving into her–“You have no waist.” Again, Yes. He Said That Too.

I don’t even think I had time to be shocked. Or… you know it was just one of those situations, like walking into a market in Marrakesh, where you just have to let it all wash over you and vow to try to remember all the sights and sounds later.

Of course, Nancy is still Nancy, folks. If anything This Cancer Journey (insert Lifetime movie music here) has only hewn her into more of what she always was—a tough cookie, and sweet to boot. I can’t remember exactly what she said, but it was something along the lines of, “Hold up there, buddy!” Amy, Nancy’s constant, devoted, caring, and almost superhumanly nurturing medi-buddy, also reacted. They’re used to this type of onslaught of useful (no infection) and uncalled for (dog ears? really, dude?) information spilling forth at a clip.

“I have a waist! What are you talking about?”

“Because I gave you one, you see. You didn’t have one before.”

Now look. Women argue with men. Wives argue with husbands. Friends argue with friends. But until you’ve witnessed the debate of a beautiful and self-possessed naked woman and the plastic surgeon who feels more of a right to claim her beauty for himself than her husband, herself, and, as far as I could tell, even God Almighty could take credit for, then you have been spared the edges of a couple of very sharp dueling scalpels, let me assure you.

Give and get, back and forth, round and round they go. He asserting, she parrying, she wryly pointing out his clear social deficits, he roundly ignoring these helpful hints by turning, again and again, to the centrality of his craft. Indeed, isn’t that why we’re all here? Because Nancy is the canvas and he its master?

But. No. No, indeed. Because Nancy is no kind of plastic surgery bunny. She is a survivor. A WARRIOR, really. I’m not really a pink ribbon type. I’m one of those people who says things like, “Where’s my Fun Run?” and other such obnoxious, self-centered garbage. I enjoy provoking and being contrary and I do not enjoy, any more than Nancy does, coddling and cooing over every emotional need. But Nancy? She is something else. She has kicked cancer, infection, and reconstruction in its big fat fanny.

Before you know it (and not before I’ve snapped a series of pretty hilarious and totally covert photos of Dr. S on my iPhone), we’re wrapping up the burlesque portion of the program and transitioning into the grotesque. We troop into his office–he seems completely informal and unconcerned about this invasion of his  personal space, basically totally unlike every other fancy pants specialist I’ve ever been around–to behold his treasure trove of photos of Nancy’s progress over time. At first I think there is some point to this, that it is part of a regular office visit and part of Nancy’s treatment. As he clicks through the photos and he points and she points and he asserts and she parries I realize, oh, no, I see. This is all just part of the performance art piece known as Nancy Visits Dr. S Again that they both, clearly, enjoy and thrive upon. They bring out the best in each other, and this is the best of the best, folks. Gladiator Wars.

Does she have a waist? There it is! she points. Uch, he scoffs. Me, mouth agape, hanging back. This goes on a really long time. Her breasts used to be “boxy” and now they are so much better. Eventually he will build her a nipple, its color to be added by tattoo. He goes out onto the Internet to show us how natural this result can look on other finished reconstructed patients of other doctors who, I guess, probably similarly after their Cancer Journeys, found themselves more interested in opening minds and hearts than covering up. Bless them and their candor. My heart peels open. My mind rewires.

The body is not the vessel; it is less, even, than that. It is just the sack of skin we carry around our hearts in, the perch for our big juicy brains, the tentacles we reach out to each other with. We can do with it what we will, as it will try to do back to us. It is a battle of the wills between the spirit and the cell, between love and pain, between courage and flesh.

Nancy is winning this battle and now that I have seen just how gracefully, and forcefully, and what the anatomy of her support system is like, I know how. I have limitations in life, I think. Somehow I would like to be part of this world that Nancy supports and that supports her back, but so far I’m not sure I’m equal to it. I’m a writer, a feeler, and kind of a weirdo. I don’t know how much I have to add. I don’t really do dishes or make beds—-I will, but you have to remind me every time. I don’t “take care of things,” so how can I “take care” of Nancy? Maybe you feel similarly confused about how to play a role in Nancy’s recovery process.

What I learned this weekend, though, is that Nancy takes care of her own dang self and thank you very much. But, she doesn’t mind a little company along the way.


Milestones

I just realized that Sunday was 10 months exactly since my mastectomy. And tomorrow will be 2 weeks exactly since reconstruction. I’m trying hard not to think about the fact that exactly 3 weeks after the mastectomy came the infection, which landed me back in the hospital just as I was getting my life back, and ended up costing me 23 days of incarceration (hospitalization); 3 vacations (Duke girls’ trip to Lake Tahoe, to Tyler for Payton’s All Star team’s state championship, and our annual visit to Boston and Salisbury Beach); 3 more surgeries; 10 days of twice-daily IV antibiotic infusions at home; and introduction to and hatred of Sucky, the wound vacuum. All in one summer. I’m sure that nasty infection cost me more that what’s listed, but those are the highlights.

I’m trying, really trying, not to think that a catastrophe is coming. I’m trying not to wait for the other shoe to drop, for the bottom to fall out, and the walls to cave in on this recovery. It’s a fragile peace. Very fragile.

Two mantras run through my head: It’s Temporary, and Don’t Borrow Trouble.

The first comes from Jenny, my survivor-sister mentor who has walked this walk, and then some. Her kids were 7, 5, and 1 year old when she was diagnosed, and like me, her case was anything but textbook. Hers was way worse than mine, and we veterans do like to compare and contrast. But she not only survived, she thrived, and she’s a shining example for me every single day. Now that I’m getting closer to being “done” with this “cancer journey” I appreciate her example even more, because she’s my tour guide for L.A.C.: Life After Cancer.

The second mantra comes from guest blogger and night nurse Amy Hoover, and along with her charging me $10 for being difficult, she reminds me to avoid looking for the bogeyman. Ignore him, assume he’s moved on. I suspect all survivors have a little bit of pessimism in them, no matter how chipper they seem. Yes, I’m glad to have been one of the lucky ones, who found it early and can bask in the security of single-digit recurrence rates. And yes, I do try to look on the bright side, count my blessings, and walk on the sunny side of the street (as my mama used to say). In general, my side is blindingly bright, my blessings are innumerable, and I need SPF 70 for the powerful rays on my side of the street. But the thoughts are still there. Sometimes.

Sometimes thoughts of “what if?” fight their way to the surface and take giant gulps of pessimistic-filled air. Those gulps sustain those thoughts as they traverse my grey matter and circumvent the rational side of my brain that tells them to hush up, quiet down, and go away. The rational side of my brain fusses at those thoughts to beat it, get outta town, and quit plaguing me with doubt, worry, and fear. And usually, it works.

But sometimes, instead of celebrating the milestones and thinking about how far I’ve come, those thoughts prevail. Instead of holding my head high even though my back still isn’t completely straight from the giant incision on my belly, I cower a little. Just a little, because I absolutely despise cowering. But sometimes my irrational brain takes over and reminds me that there are no guarantees in life, and there certainly is no travel insurance on this “cancer journey.” I’m the poster child, after all, for doing everything right lifestyle-wise yet still being crapped upon by the giant cancer bird in the sky.

You know me, though, and I’m not about to let some giant bird or some niggling thoughts stop me from living my life. And living it out loud. Today I will celebrate being a 10-month survivor.


E Roosevelt said it best

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” — Eleanor Roosevelt

Well, I did indeed live through the horror (or horrors, if we’re counting the previous surgeries, procedures, and nastiness), so I guess I can indeed take the next thing that comes along.

That next thing better be something good.

It’s been a long road, and while a lot of people have even longer and more pot-hole-filled roads, I’m thinking only about mine right now. I’m still recovering and can be selfish like that. I won’t ride that wave too long, or play that card too often, but for today, I’m thinking about my road and no one else’s.

I really like the quote above from Eleanor Roosevelt, and thank Susan Christopherson for passing it along to me in the early days of my “cancer journey.” In those early days, I had no idea that the diagnosis and mastectomy were going to be the easy parts, that a nasty infection would make those previous experiences seem like a walk in through a rainbow-infused meadow with my pet unicorn. Ha!

Another quote of Ms Roosevelt’s that’s always been a favorite of mine is “A woman is like a tea bag. You never know how strong she is until she gets into hot water.” True dat.

I’ve had a lot of comments about my fearless attitude, and some people have kindly suggested that my sunny outlook has helped propel me through this “cancer journey” without much trouble. If you want to know how I do it, the answer is: I don’t know, it’s just what you do.

I grew up with the “it’s just what you do” principle, and maybe it’s like freckles or pigeon toes–you either got it or ya don’t. My parents did instill that principle, and they did a good job, so it took. I certainly don’t wake up every morning with cartoon birds singing out my window and little woodland creatures bringing me my robe & slippers (although that would be pretty cool). If they could bring me a skinny latte, that would be even better.

I suppose there are two ways to face a horrifying situation: head-on, like Ms. Roosevelt suggests, or with your head buried in the sand. I’m a head-on kind of girl, and the head-in-the-sand approach has never worked for me. I kinda admire the people who can do that, though, because it seems a lot easier. But here’s the thing: no matter how you face a scary situation, it’s still scary.

Cancer didn’t make me brave. I don’t think it’s a gift (as I’ve written about before, and will continue to rant about at any given time, so get used to it!). Good things can come from a bad situation, but the bad situation does not magically become a good thing.

The truth of the matter is that cancer sucks. Whether it’s an early diagnosis and best-case outcome or late-stage and aggressive, it just sucks. There are untold ways in which it sucks. And there are innumerable ways in which it affects your life and body. For me the scariest and suckiest thing about cancer is that once you have it, you can do everything right and face everything head-on with no guarantee that it will all work out ok. That’s just not right. Our society is based on the idea that if you work hard, you will propser. The American Dream, right? Well, cancer doesn’t subscribe to that idea. It’s random, and vicious, and unfair.

But guess what? We don’t have to fear it. Yes, it is one of the worst things that can happen. Being diagnosed (with no family history) at a (relatively) young age was a serious sucker-punch. My world has been topsy-turvy for the last 10 months. But as my sweet friend and survivor sister Jenny reminds me, it’s temporary. In fact, she was kind enough to make me a poster right before my reconstruction last week to reiterate that idea. I wanted to take it to the hospital with me, but the extreme heat of the ICU room would have melted the glue dots and cute sparkly stickers. 

Jenny has reminded me from day one of my “cancer journey” that it is temporary, which means I can endure it. I can get through it. Some days I’ve questioned that, and Jenny has texted me a simple message: it’s temporary. Knowing that removes some of the fear and shifts that balance of power from cancer back to me, where it belongs.